I have been using my Silver Ring Splints for over 5 years now. This year, I had to add 8 more to my collection as my hands continue to degrade. I deeply appreciate their support as I have reached a point where I cannot write without them due to my easily dislocating thumb MCP joint. Holding a pen has become quite challenging. Over the past 5+ years, I have adapted to wearing them every day at work, where I often encounter people who comment, ask, or just stare awkwardly. I believed I had successfully developed confidence in using these mobility aids. I have become skilled at explaining to strangers that they are not mere jewelry, and I stand my ground when faced with inappropriate comments, always maintaining a respectful approach. However, I was invited to help moderate a wildlife identification group for the Carolina’s on Facebook…

I already admin a local wildlife group and have been a part of a global group called Antman’s Hill, so the group themselves aren’t an issue. I’ve become a big advocate for helping people appreciate insect and arachnid wildlife, so I’m quite used to confrontation. The local group, most have known me for a number of years so they’re used to me. The global group? I don’t post a lot of my own photos because they’re already insect based. This new group though? We’ve got tons of people that will speak for all sorts of other wildlife and tons of folks that will post birds, deer, coyote, otters, and the more ‘loved by most people’ kind of photos. So, to the surprise of nobody that knows me in person, I posted a photo of one of me handling one of my spider friends.

Most of the comments were a mix of exactly what I am used to. Appreciation, curiosity, shock, and a sprinkling of fear and hate that had to have active moderation. What I wasn’t expecting (and I really should have) was a lot of comments making note of my splints. For all the work that I’ve done on the subject, this actually threw me. I’ll share just a few of them. None of them were negative in any way. There were a few EDSers that called me out, which to be clear isn’t an issue it is just a note. There was someone that informed a commenter that my “jewelry” was medical.

Let me be very, very clear in saying that none of this is actually a problem. Nobody commenting was in the wrong.

I found myself in an internal conflict. Should make a point to take off my splints before taking any photos that I’m going to share? Was I subconsciously looking for attention? Should I keep my EDS out of wildlife groups?

I sat for a while with this. I didn’t want to get the perspective of others quite yet, I wanted to make sure my thoughts and stance were my own. Before I share the conclusions I came to, I want to make sure that just because this is where I came settle, it is in no way saying this is the stance I feel others need or should adopt. This is where I personally am in my life and my journey. You are not less if you do not hold the same views or perspective as me. That being said….

After long consideration, I have realized that what I was questioning, was internalized ableism. Ableism, is discrimination in favor of able-bodied people. Internalized Ableism, is where your own actions and thoughts try and put able-bodied expectations to yourself at a subconscious level. My rings aren’t jewelry. They’re mobility aids. If I needed a wheelchair, it would be like considering taking photos without it so people didn’t see it and make comments. Hide anything that brings attention to the fact I’m disabled. It made my heart hurt a bit. Realizing that I was considering making a point to hide something that is a part of who I am. My EDS isn’t something I have chosen to have. My splints aren’t something I wear for attention, they’re something I wear so I can do things that feed the light in my soul. I can still choose whether or not I have the spoons to interact with those comments in the moment, but I am not going to remove something that helps me live my life with joy for the sake of appearing more normal. So I will continue to post cool pictures I get of our tiny wildlife friends and remind myself that a goal of mine is to normalize having to use mobility aids, speak about chronic illness, and normalize being disabled in everyday life. It’s also a very deep reminder that no matter the work we do, it’s absolutely normal and okay to still discover bits of ableism hiding in our subconscious. It’s all about what we do about it when we discover it.

Again, I don’t hold expectations of anyone else to take my stance and run with it. It is absolutely valid if anyone wants to take off their splints or hide other mobility aids for whatever reasons. We are all in different points in our journeys and our paths are our own. My chosen stance is in no way a judgement on anyone who stands otherwise. Find your joy. Nourish your spirit.

Depression

Depression is a insidious disorder. Often you don’t know how bad it really is until something triggers such a reaction that you say “oh dear heavens, I want to die”. Depression and thoughts of death go hand in hand. Not always, but chances are if you’re thinking of your own death, you’ve been suffering from depression. That’s my experience anyway.

Insidious because often it’s just a cascade of things dragging you down until the feeling of drowning is overwhelming. Maybe it is your job, money, family, friends, school, health or something else that drops you down into the Blue Meanies. I’ve always called my depression the Blue Meanies, probably because of my love for Yellow Submarine by the Beatles. In the movie, the Blue Meanies are trying to destroy all music and color in their world, turning it grey, dull and hopeless. I have that feeling quite a lot, ergo the Blue Meanies have invaded my spirit. I often don’t see them coming until they have a pretty strong hold over my spirit and I’ve become quiet, less animated, more prone to dark thoughts. (see https://www.musicmusingsandsuch.com/musicmusingsandsuch/2018/7/17/feature-blue-meanies-and-the-liberation-of-pepperland-celebrating-fifty-years-of-yellow-submarine)

Dark thoughts can take many forms. These are some of mine.
* Feelings of unworthiness
* The world would be better without me
* My health means I can’t work, so what do I contribute to the world?
* Who would notice if I just wasn’t here?
* I’m a burden to all around me, financially, emotionally and sometimes physically.

I write these down so people can see MY thoughts. While I think of death regularly as a friend I would welcome in, I do not have suicidal thoughts. If you do, please call 988 in the US for help. Trained crisis workers will help figure out how best to help you. Suicidal thoughts are not bad, not abnormal. They’re honest feelings that have to be allowed space to live. All feelings deserve to exist, but for some reason, feelings of death, self harm and hurting oneself is considered taboo to talk about. I’m not the person to talk about any of those, as I’ve never felt any of them in a way to truly talk about it well. But I can remind people that any and all feelings are valid.

Some of my depression is caused from my genetic disorder. Knowing you live with something that makes every day a challenge is hard. Many days I force myself to shower, because it’s the only thing I can do that day. I don’t cook anymore, I bake very rarely, but I do clean up after meals. Headaches that are so bad that focusing on anything is close to impossible, but what do you do all day if you can’t read, crochet, type etc? You choose sleep, but I can’t spend my entire life in my bedroom. Believe me, I’ve tried. So I get up, take that shower, eat, read a book on my iPad (easier to hold and I can make the font bigger), crochet, watch TV (I try not to do this until late in the day) and talk endlessly to doctors and their staff about symptoms or next steps.

Add in being a highly sensitive person, for whom the slightest raised voice or unkind word is like a wound, and you have a person who doesn’t feel like they fit in anywhere. And when someone feels like that, then depression is close by and the Blue Meanies are smothering the world to you. Fitting in isn’t exactly easy all the time. I struggle with where my place is, who AM I without being able to work. I have no children and no partner to be responsible for. Sometimes I feel “less” because I don’t have those typical things being very close to 50. And I’ll never have children, which I don’t necessarily regret, but I also wonder what I’ve missed because of it. How much did my depression play into my choices not to get married or have children? Quite a lot. I never felt that I was “good enough” for the men in my life. Or I thought that I was enough, but they weren’t. Being a HSP, I’m very good at reading people’s facial expressions, body language, etc. Which means I sometimes can feel what someone wants from me without them telling me. And that sometimes means that I’ll change myself to fit what that person wants or I think they want. It’s a conundrum, and it’s part of who I am, to try to fit what I think people want from me. And it’s a hard thing to recognize that is one of my personality traits, as I refuse to call it a flaw. It’s who I am, and I have to recognize it. I was watching Ted Lasso for the 3rd time and I thought of how Ted and Rebecca use a codeword of “Oklahoma” to say if something is true or not. To talk about their honest feelings, which is hard to do. Fo many people, I wear that mask of “it’s all ok” and very few people see the Oklahoma version, the true feelings and emotions I have. For most people, I wear a heavy mask, as if to say “I’m ok, really I am” when the truth is hard to admit because how many people actually want to hear that your day, week, month or year has been shitty and death could be preferable? VERY few people want to hear that. I don’t know how many people truly want to hear it. Even if they say it, very few actually want to know it. Because in my experience, telling the truth on how you feel only sounds like complaining and I don’t want to be someone who only complains. I would rather people think of me as someone who fights through things and rarely complains, but also rarely goes out because of pain. But that’s part of me. And I’d rather be quiet and respected for being “strong” than have people say that I only complain.

This is essentially what depression means to me. It’s hard, lonely and quiet. But as long as I talk to the Blue Meanies and welcome them and don’t pretend they aren’t there, then I can accept them and live with them and work on how to work through them. I accept them and will always have these feelings, as long as I live. I just need to know they’re there and try not to let them take over. As long as I don’t let them take over, then I can live on.

Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles
And by opposing end them. To die—to sleep,
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to: ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep, perchance to dream—ay, there’s the rub:
For in that sleep of death what dreams may come,
When we have shuffled off this mortal coil,
Must give us pause—there’s the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th’oppressor’s wrong, the proud man’s contumely,
The pangs of dispriz’d love, the law’s delay,
The insolence of office, and the spurns
That patient merit of th’unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovere’d country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience doth make cowards of us all,
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry
And lose the name of action.

Hamlet, spoken by Hamlet

While Hamlet is speaking of a more permanent death, what I’m going to write on today is a smaller kind of death that is related to that of significant change that is not always something we choose to take on. The tiny deaths that happen every time a new part of us gives out and forces us to adapt our way of life.

For me, I’ve recently been facing this with my ability to create art. While I write in my spare time, I live for my art. It’s partly how I manage having EDS and its various complications. It’s how I grieve. It’s how I process some of my psychological trauma. It’s how I distract myself when pain is constant. It’s how I show love. It’s how I survive. I do so many different types of art that I can’t keep track anymore.

And now, EDS threatens again to take it from me. I faced this before just a few years ago. The connective tissue in my hands have always been extremely hypermobile, but my left hand had suddenly developed exceptional pain in my thumb. I couldn’t knead clay. I couldn’t bead. I couldn’t even wash my hair efficiently. Thankfully, I had just started seeing a rheumatologist that was a bulldog against my insurance and got me a full set of swan necks and a thumb plate for my MCP joint that started to fully dislocate with minimal effort.

I wrote a full other post about my ring splints to talk about it before, but it was done long after the period of adaptation. I was able to type without taking breaks to cry and scream how I hated the feeling. I had already started beading with regularity at that point, rather than throwing a piece only a few rows in because I couldn’t get the needle to do what I wanted. I was writing almost with the elegance I expected of myself, not the chicken scratch that I fought to get out with the new splints. I did this intentionally because I wanted to show that it’s totally worth it! It was worth all the screaming and crying over the difficulties and discomfort.

But, now I’m facing it again. My right hand…..my dominant hand….has betrayed me. The MCP freely dislocates and is constantly in significant pain. My hand that holds the paintbrushes. The hand that writes. The hand that holds the carving tools. That hand is now unable to hold anything without shooting pain.

The hurdle at hand (mind the pun) is whether I want to put in the effort to adapt yet again. It may seem to the reader, that this is an obvious thing. If art is life, then of course I would choose to adapt! While, yes, I’ve ordered a thumb splint…I assure you that it was not an easy decision or a simple and pleasant experience to decide this. It’s the turmoil of facing such a thing that I wanted to shine a light on.

The first aspect of this is the gut punch that is yet another failure of the body caused by Ehlers-Danlos. I’m angry. I’m short tempered. I’m heartbroken. I’m grieving. Whether or not I adapt, there’s a grieving process that comes with the small death of yet another thing I’ve gotten comfortable with having in my life that will cause significant change no matter what I choose to do. It happens with everybody and every body. Most experience it with old age, but some of us experience it younger than we ever should for various reasons. This only adds to the rage and grief. Angry at people who get to experience a full life of enjoying things they love without such challenges. Angry at people that have their mobility and abilities cut short from their own obvious poor choices because it feels like they’re reckless as a toddler. Angry at people with acute and curable hurdles because they can go back to normal. All of this is a lot of anger to process. I’m grateful to my sister, and I’ll take a moment to push her books by saying you should look up Kahaula on Amazon, for all of her help during this time to keep me grounded as well as helping with a safe space to scream without judgement.

As the grieving is processing, there’s the decision of whether to adapt or to let go. To be, or not to be, if we go back to the quote I used above. Because each option carries with it emotional baggage. Neither is the right answer or the wrong answer. They just are. And this is something of a problem in the chronic illness community as well. The overwhelming battle between saying “you’re not your productivity” while pushing “but don’t give up on things you like to do” to anyone facing such a problem. It’s a bit hypocritical and I don’t think we acknowledge that quite enough.

It’s not as simple as forcing yourself to be cheerful and pushing onward. It’s evaluating your own mental health and deciding what’s best for you in the long run. Because sometimes, giving up something you love, is actually healthier than trying to force yourself into adaptations because you are pressured into not giving up. Only you can make that decision for yourself, and that’s important. This is also a great point to mention that a therapist can be an important sounding board for such things.

For example, with my art, I know the new splint isn’t going to be comfortable, no matter how skilled the splint maker is and how perfect it fits. I know it took me several months to stop shaking my hands to stim from the discomfort last time. I know I’m going to absolutely hate the process of adapting because it’s learning skills all over again. It’s not a pretty process. It’s not like the inspirational video posts you see where someone disabled just tried hard, had a few frustrated moments, but pushed past it with joy and everyone was celebrating YAY! It’s trying.

The other side of this is knowing that it’s uncertain how long any adaptations I get used to will actually last. I **JUST** got back to painting my feathers even semi-regularly. Right after I fully adapt, I’ve got to go through the cycle **AGAIN**. It’s one more thing on top of the never ending accumulating mountain of things I’ve got to manage with this damned disorder and the constant malfunctions it causes.

It would be easier to just let it go. It would be less stress on me and my slowly falling apart hand. It would be less stress on those around me as I go through the emotional turmoil of the process to adapt. It would be more certain than trying only to possibly be let down as soon as I fine tune my adaptation. After all, I’m not my productivity. I’m not less if I come to the point that I can’t do my art. I’ll be sad, and I’ll grieve, and I’ll be angry…but I’ll eventually put my energy toward something else to keep my heart and soul occupied.

Is trying to keep doing art only speeding the decline of my hands? Am I creating a path to permanent disability that’s paved with dried paint and wood shavings? Could I extend the life of my hands by giving up most of my art? And could I live with myself if that’s what I chose to do?

There isn’t a right answer, only what’s right for me. Just as when you face your own hurdles, there’s only what’s right for you. I took a long time contemplating all the angles before deciding what was in my best interest. I can’t see surviving without my art at this stage in my life. As soon as I came to be aware of that, I made arrangements to order a splint to suit my failed MCP joint. And I’ll take all the rage and spite and fury and channel it into moving forward

I’ll cry and scream and probably throw a few innocent paint brushes. I’ll judge myself much too harshly for not adapting faster and producing the quality I expect from myself. I’ll get angry at the loved ones that remind me to be kind to myself on this journey. I’ll curse the gods and the body I’m in. I’ll do this all in spite of how much I’ll try not to. I’ll mask the myriad of emotions like the ocean hides Her rip currents until the wave becomes too much and crashes over. And I will do all of this not because I want to be an inspiration for everyone to push through and adapt no matter what. I will do this for one reason, and one reason only.

Because it’s what I’ve decided was important to ME.

Not to family that wants to see me continue. Not to people who want to commission me. Not to doctors that have their opinions on both sides. Not to people I work with that think I can adapt to almost anything. Not to my partners that both know what being able to create means to me. Not for other people to utilize for their own motivational needs.

For me.

That is what I want you to get out of this. Adapting is fucking difficult. It’s not a Hallmark movie with one sad day and a perpetual cheer squad. It’s horrible and I refuse to sugar coat it. It has potential for amazing things and I know that I’ll also cry tears of joy when I’m able to paint to my own standards again. I know the pieces I create out of all that anger and spite will be incredibly emotional statements that I can look back on. For now, it’s worth all of the struggles I’ll face in order to get there. While that makes it easier…it doesn’t make it EASY…and that is a significant differentiation.

It also brings me a great comfort that when I choose to let my artistic side rest for good, that it will be on my own terms and my own choice. I’ll know that I tried, and I know that I did everything I possibly could to extend the ability of my hands by doing things like wearing protective gear and mobility splints. So when that time does come? I don’t think I’ll ever be ready, but I’ll know it’s time. I won’t be a failure because I’m not somehow pushing through to find a way, just like I wouldn’t be failing if that was my choice right now. I’ll have the same comfort then, as I do now.

That the choice I made was mine, and for me alone.

I wish all of you the strength to make all of those hard choices that EDS, or any other hurdle, forces you to face for you, and you alone. Wishing it won’t hurt is futile, so instead, I’ll just wish you find peace in it and live your best life.

Over the years, I have done a lot of work with the trauma I’ve faced. One of the things that I’ve come to rely on is my memory. Now, I’m aware that every human has a flawed memory. But I had the skill of recalling conversations down to body language, tone of voice, and expression. It was a survival technique my brain picked up along the way as gaslighting was something I grew up with. It was also one of the challenges I’ve had, when there were memories I didn’t want to have on instant replay. Whether it was a positive or negative…I still relied on it. It was a point of pride, sometimes even dark humor as well. I still remember events from childhood as if they happened last year. I also knew that the time with one of my ex’s was a time I tried not to remember. I actively pushed those memories down. I was still aware of them, though. I touched on some of it when I wrote THIS ARTICLE here.

Recently though…I was brought to the sudden realization that there were a whole vault of memories I had subconsciously repressed about that specific time. I had literally had them so tightly locked away that I had no awareness that they were even there in the first place. The funny thing, at least to me, is that it wasn’t trauma that caused them to resurface. It was a string of good things.

I met a new artist friend that did an incredible piece for me. I love it so much, that I already planning a few more pieces and will showcase them in a different article that isn’t tainted by the rest of the subject matter. It is a risqué rendering that features some of the hidden aspects of having Ehlers-Danlos. I had to have someone take photos of my body in order to get this, and it was a bit of a challenge on facing down body images. But let me tell you, this guy was utterly fantastic through the whole process. Encouraging, funny, kind, and supportive of the whole project. It took all the anxiety I had and washed it away. In the end, I got a spectacular work that is proudly hanging in my living room.

Relationships are also great! One of my partners has decided to get a bit more experimental and it’s been fantastic! Even the recent commission plays into that as it helped me get more comfortable with my body the way it is. So he’s been thoroughly enjoying the new turn! The other half is getting a new job and we’ve been cuddling and going for walks. And…I guess this is where I realize that I’ve come out as polyamorous. Because for me, it’s important to the rest of how this plays out so no turning back now. Might as well add that I’m a bi demisexual that is Two-Spirit while I’m at it. There. It’s all out there now. Because I’ve lost the fucks to give on it.

So everything was fine. Everything was great. I’m working on new projects, making new friends, networking with new friends……..and then….

I knew I was stressed for reasons I couldn’t put my finger on. I chalked it up to all the normal stuff. Weather. Pain. You know…normal EDS bullshit. Until the very last straw. My one partner decided he wanted to give oral. We’ve had discussions on how I’m just not comfortable with it, but it was never for a reason. It just…was. I always just kind of disassociated during and felt weird after. But he was SO sweet about everything. And SO cute. It was never set as a hard no, only a soft no, so when he was being coy saying he “wanted to play, but his hands were cold…but he could use something else” I got swept up in the moment. Until I didn’t. It was the strangest feeling of wanting to be there and wanting to run and mentally lock myself down at the same time. Even after, I just felt distressed and uneasy.

It wasn’t until the next day that everything came forward. I remember the ex being sexually abusive and mentally abusive. But somehow…my brain had taken a large collection of some of the worst experiences and hidden them from my conscious mind. I knew it happened. I know of people that have missing memories. My other half has missing memories. I just…didn’t think I went through anything worth it happening to me. I thought what I remembered was bad enough that I would obviously recall the rest of it.

Things came slowly at first. It wasn’t like the world was ripped away from me. It was a brief memory flash that was completely unfamiliar. So I mentally dove after it because I was confused. The deeper I went, the more came flowing towards me. I felt like Pandora opening her box, but instead of everything escaping…I was being pulled in.

The details of what I remembered are not something I will be sharing. It should suffice to say that what he did…was turn sex into an unpredictable and violent act. And it was a number of years before I was able to get free. What I will say, was that it was the positive interactions that I had. It was talking about my own photos and it being a fully positive experience. That during something my body remembered as traumatic, I was relaxed and unafraid and with someone that I know is safe. They were such a complete contrast to everything that came up, it’s the only thing I’ve been able to come up with as to why that was the trigger.

The flood of emotions that I experienced during this…I can’t even properly explain. It was being lost in the middle of a hurricane at the worst of the winds and the waves. I felt betrayed by my own mind. I felt like I had gone leaps and bounds backwards in all my healing because of things I had forgotten. I felt like I couldn’t trust my memory. I felt sick and disgusted. I felt the violation all over again. And before I got lost…I called my zebra sister. She worked with victims before and I knew she was a safe place. My partners…all I could feel was that I had lied to them or betrayed them by not remembering. I felt too dirty and tainted to talk to them. That it wasn’t fair. That I wanted to enjoy things with them. That they shouldn’t have to make accommodations for things I didn’t even remember. That it wasn’t fair to feel the way I do towards people that love me so much. So I called her.

I will repeat the important parts for anyone else that needs to hear them. And I plead, that if you ever face such things yourself, that you remember this. No. It’s not fair. This trauma turned sex into a violent act for my body. It’s not my fault. It’s not their fault. It is the fault of the one that caused the trauma. It isn’t my fault for not remembering. I am not weak for not remembering. I am not flawed for not remembering. I am not broken for not remembering. My brain did exactly what it was supposed to do, and it did such a good job, I didn’t even know it did it.

It kept me going.

20 years away from when I first met that monster…and my personality is completely different. I no longer am the young lady who believed that if anyone showed her attention, it was simply to get sex because she was otherwise worthless. I no longer am the timid thing trying to make everyone happy. I am no longer the person trying to be so small she hopefully goes unnoticed and left alone. I am no longer hiding behind walls of reinforced mental concrete.

Hiding the horrors of what happened…allowed me to get this far. I share raw stories so that others may not feel so alone. I have a rich life of friends from all over the world. I pushed myself to get over debilitating phobias. I express myself with my artwork and am not afraid to challenge when necessary. I’m actually quite proud of how far I’ve come.

That it is coming up now, because I’ve become the kind of person that CAN handle it. That my subconscious felt safe and confident enough that it drug the festering bag of rot so I can get rid of it. That is how I’ve taken to processing it. I got past so much, and now I’m at the point where I can get into the heavy stuff that would have broken me if I looked at it before.

I did manage to talk to both of my people about what I was going through. Why I had been upset and tweaky. Why I didn’t want to be touched. The initial feeling was that all of that progress was lost. I was reminded by my other half, that I was already pretty messed up when he met me. I was doing the best that I could do just to survive what I DID have on my plate. And there was a few times in those early years of meeting him that my body did try to go into an early exit. Nothing intentional on my part, it just…was not okay. Looking back, my body remembered what my mind hid from me. Every time I disassociated during sex, was because it remembered and was doing a kindness in its own way. My partner took the other route and reminded me that I’m still the beautiful woman that he has loved this whole time. For him, nothing has changed when he looks at me. They both hate what I’ve gone through, and I got plenty of love and support. But for them, they never had a glimmer of disgust towards me or hesitation to hold me. Rage at the ex….but nothing but love and support towards me.

All of this just reinforced that it really was time to get rid of the rancid aspects of what had been carried with me this whole time.

So I took a full two days, and let the memories come as they would. I let them go. I screamed, and cried, and wailed, and threw things, and slept, and did the same thing the next day. I faced all of them. Every horrific memory that swept through my mind. I faced every last one. I didn’t go looking for more, but I faced what came up.

And the strangest thing happened…

I realized that I wasn’t feeling scared of my ex. I was livid. I wasn’t angry and upset with myself for going through it or not escaping sooner. I was raging at him. I wasn’t disappointed in myself. I was full of disgust for those that instilled those feelings of worthlessness of the self before I met him. In those moments, I realized just how much truth the words of my zebra sister and my partners rang true. That I was a completely different person that who I was 20 years ago. That as terrible as this experience was, and horrible as those memories were to face…it was the fact that I could face them. They still hurt and they still were something I’d not volunteer to go through again by any stretch. But I could. And my brain, as much as we argue, somehow knew it was the right time.

I don’t know if there’s any others back there. I don’t want to go looking. This is one time, where I can say that I trust my subconscious to know when it’s time to let me know if there’s anything else. But as I’m writing this, I’m no longer overwhelmed with emotions. I’m not breaking into uncontrolled sobs just because someone texted me if I’m okay because they’ve not heard back from me in a few hours and that’s unusual. I’ve been back to work and getting back to all my classwork that I missed during this little meltdown.

I’m grateful that I had all of these positive things that came together, even if it triggered something unpleasant. I’m even more appreciative that I’ve gotten to be the person that is able to see all the fantastic things I’ve got going on and celebrate despite the negative. Even though there’s more to go…repressing the memories wasn’t something that was bad to do. It wasn’t a fault or a flaw. It was actually something pretty impressive. So I’m even grateful for my brain’s ability to do that.

So if you end up with memories that come back. Or you have holes in your past. Take a moment to thank your brain for looking out for you. You don’t have to like it or being excited about it. But just try to be grateful that you’ve got such a cool survival mechanism. Call a trusted love one, call a trauma therapist, call whoever you need to be safe, absolutely and always. But you got this far and I’m proud of you!

And just for one final…something that gave all that emotional energy a place to channel…this is one of the songs I used. Hope you enjoy it as much as I needed it

Someone I care about shared a quote. My knee-jerk reaction to this was to think that it’s absolutely beautiful and brought me quite a bit of joy. The quote was from the book Beautiful Lies, by Lisa Unger and said, “When you start to know someone, all their physical characteristics start to disappear. You begin to dwell in their energy, recognize the scent of their skin. You see only the essence of the person, not the shell. That’s why you can’t fall in love with beauty. You can lust after it, be infatuated by it, want to own it. You can love it with your eyes and your body but not your heart. And that’s why when you really connect with a person’s inner self, any physical imperfections disappear, become irrelevant.”

And still…I find this to be a beautiful statement. It’s something that a partner of mine discussed on multiple occasions, the most significant of which was when I was first facing ankle surgery and the diagnosis of Ehlers-Danlos was becoming horrifyingly inescapable. I was scared. Scared that I would be a burden to those I loved. That all they would see is my inability to do things with them. My hurdles. My splints. My crutches. My pain. That’s all I would become, a reminder of ugly things in life and they’d stop wanting to be around me because of it. He was very gentle as he spoke to me and asked me to elaborate. He listened patiently. Though my sobs and my long-winded rambling. Then, with a smirk, he nodded and said, “Ah. I see. So, what you’re saying, is that if I fall off a roof and get hurt that you’ll stop loving me?” I was appalled that he would say such a thing and told him so! He then put on a very confused expression and pointed out that was exactly what I expected everyone else to do, “Are you saying your better than me?”, and the smirk returned. The conversation took turn and we discussed that I need to maybe accept that I’m loved in the same way I love others. That’s it’s more than looks, or what they can do for me. It’s who they are as a whole.

So when a friend posted this quote to her social media…those memories came up and filled me with a love that is all encompassing and rooted deep in the soul. A reminder that what love means, isn’t your productivity or whether or not you’re sick. You intelligence and your skill doesn’t make you less or more worthy of love. Nor does having a degenerative disease make you less deserving of love. Because being human and sharing love is MUCH bigger than any of that.

But then…the thoughts took a turn…

I’ve written about difficult times growing up. How I put myself in therapy and had to digest the fact that I had treatment for cPTSD and not just depression. But all the acknowledgement and processing for all those years, and sometimes it still pops up out of nowhere. Memories strong enough that I can still see the whole scene play out and hear it play in my head word for word. Having your mother tell you that your bra size was too big, which means you were fat and needed to watch what you eat…I was still in Jr. High and wasn’t even over 100lbs. I just have a big chest. Or having her pinch your belly skin when she walks by and reminding you that if you were fit, she wouldn’t be able to do that. Nitpicking about how my hair was cut. What clothes I liked. How I sat. It was all superficial nonsense.

Which, some of this can be normal. Parents are supposed to help teach their kids how to be functional adults. So no, your parents telling you that you’re not going to a family holiday dinner dressed like you’re going to a GWAR concert isn’t them being abusive. But it’s also supposed to come with praise and acknowledgement of good things. An encouragement of passions. If all they do is nitpick on your outward appearance and superficial traits while ignoring all of the beautiful, unique, and incredibly important traits about you that make you the fantastic person that you are? This is probably something you need to tear apart and inspect a bit. Parents are human too, and sometimes personalities just clash. But sometimes, unfortunately, they’re just not capable of providing actual love. Maybe they’re hurting, maybe they need therapy, maybe they’re just mentally unstable. What matters there is you take a healthy look at whether they’ve been supportive and maybe it just looks different than you’d prefer…or…whether they’re honestly not and you need to reach out to get yourself the help and support that you deserve. No matter how old you are or whether you parents are even alive or not.

The quote then hurt. It was a reminder of people that were supposed to be showing me that love as a child and what I didn’t get behind closed doors. Feelings of jealousy for people who grew up in families that loved their kiddos. People with kids who share how proud they are of them and you can tell by the interaction that they mean it honestly, and not just something they are sharing to get praise for what a good parent they must be.

Then…the thoughts got darker

Because the quote can also be used as a tool of manipulation. This is even more common if you grew up without experiencing an environment to grow up with in which you experienced love. If you don’t know what real love looks like? It’s awfully hard to recognize it from toxic relationships.

Every relationship has hard times. No matter how much love is involved, everyone gets stressed. Everyone has a breaking point. Everyone has a line in the sand. And everyone is entitled to their limits and taking steps to ensure their own mental and physical health. But abusive situations often contain a lot of guilt trips and passive aggressive statements surrounding the idea behind this quote.

If you REALLY loved me, you’d understand. If you REALLY loved me, you’d give me another chance. If you REALLY loved me……

I lived in a relationship like that for too long.

Yes, love means that you absolutely love the person despite their physical state, despite their mental illness, despite their trauma, despite their hurdles. Because the person is so much bigger and so much more than that alone. HOWEVER!!! Love doesn’t mean that you have to put up with being abused because they’re not putting in the work with their own issues to not hurt you. You can love them, and still walk away because you are important enough to not be a verbal or literal punching bag. Love isn’t being expected to fix their problems by constantly modifying your behavior so they don’t have to. Love isn’t being expected to constantly allow your boundaries to be crossed and disrespected.

Have open and honest discussions about any problems. Walk away when you feel you want to scream at each other. Find compromises when you can and work together on other options when you can’t. But do not bully the other person for having boundaries and do not allow yourself to be made to feel less human because you are sticking to yours.

I’m keenly aware that this is a difficult subject amongst the zebras. There’s so many in the discussion groups that I see where their partners up and leave because it just got too much for them. I’m not in their relationships, so I’m in no spot to even speculate on what happened or if there were other things that could have been done. I empathize with them because that’s an incredible pain, even if it happens to be mutual. I illustrated that fear in the very beginning of this post.

And I wanted to be angry about the quote. To make corrections and say that’s not always the case and how that can be a bad thing too. To warn people not to post things like that.

And the more positive turn that I promised…

Despite all of this, and some of the darker more intimate aspects of this thought process that I refrained from the elaboration of…I came back to that initial feeling I had about this whole quote.

I sat with all of these thoughts for a few days. I let all of the memories pass through, gave them their space, and “talked” to them. At risk of sounding like I’m anthropomorphizing them, the two sides kind of argued in my head. One was screaming that the post was dangerous and full of misinformation, while the other just kind of sat and softly smiled…with love. Simply existed, full of the love I’ve experienced thus far.

One of the things my therapist and I have worked on over our time together, was that if you didn’t have the love growing up? Give it to yourself. Be that source of love for yourself. Get help if you are incapable of doing that, because all of you are worthy of feeling that love. Doesn’t matter if you’re healthy or a zebra that’s a constant medical train wreck.

You are worthy of love.

You deserve love.

You can experience love.

Love doesn’t have to be happiness all the time. It doesn’t mean there will never be arguments. It doesn’t mean there will never be pain. It doesn’t mean hurt will be less in bad times. It doesn’t mean personal limits are negligible. But it means that you’re seen and appreciated for all that you are. That you can have the more painful discussions cushioned in that love you have for each other.

I didn’t have the “bad feeling” reaction to the quote because there’s actually something wrong with it. I had that reaction because the trauma part of my brain was trying to give me a warning to protect me. To remind me not to trust blindly just because *I* feel love towards someone. To remember that love is much bigger and much more significant than people who abuse the concept for their own purposes. To remember not to bleed my trauma over beautiful things, and instead sit and “talk” with it and divide the trauma response from the reality of the situation.

It’s also served as a personal reminder to how far I’ve come over the years. To remember that trauma isn’t ever fully gone, and that’s okay. It’s not a personal failing when it comes back, it’s an opportunity to reevaluate your beliefs and adjust or take action if necessary. To appreciate the love that I have in my life. And be grateful for the reminder that for as bad as things were…it’s learning to give that love to myself that opened up the ability to accept it from others. Though it can still be touch and go sometimes because brain chemicals are a pain in the ass, and it certainly doesn’t fix everything, it makes the world so much better to live in. Give the love you need to yourself, and it makes it easier to express it in healthy ways to others.

Because real life and human nature will always have boundaries. But love? Love doesn’t see the little things. It sees the most important things about ourselves and embraces the light that our soul creates. And feeling that, even if it’s just from yourself, is worth facing every hardship and every hurdle.

I wish all the love to each and every one of you.

However, I know several people who chose not to get vaccinated on a religious basis (and this was also confirmed by our Coyote in Zebra Clothing that heard it from several people in their area). They say that G*d will save them. My theory is that G*d taught humans to be smart enough to follow the damn SCIENCE! There’s even a past article about leaning on how leaning too much on faith has been harmful! As humanity has spent so much time learning how to save ourselves, why do some have to choose to help themselves live? Or at least not get sick?

We don’t question our use of seat belts anymore (the law was instituted when I was a kid, and now I feel horrible not wearing one 50 feet up the road). We don’t fight not smoking in a building. Stop signs and lights are laws of the road. These are public safety laws. Ones that have existed for quite a while and probably 99% of the people around follow these laws! Yes, there are always law-breakers, but for the laws above, it is rare here in the USA. But the choice not to get a vaccine or refusing to wear a mask is not helping public safety. In fact, you may be killing others. And these laws aren’t just to help protect your neighbor, they’re for those responders that are responsible for your care. The seatbelts so first responders didn’t have to have as many mangled bodies to scrape off the road, and the covid mandates were SUPPOSED to also be for our doctors and nurses to not be overwhelmed while put at constant risk. The lack of care for them in favor of this blatant selfishness is horrifying.

Vaccines are safe. While statements of vaccine injury are popping up in social media posts, the documented number of TRUE VACCINE INJURIES are one for ever million vaccines. One. And that come from a legal team that represents injured patients. 99.99% of the people alive in the USA have had a vaccine for Measles, Mumps, Rubella, Chicken Pox (or lived with it as I did in the 1980’s), typhoid, polio, and more. Smallpox was eradicated in nature thanks to vaccines. The COVID vaccines are new, but the disease is also new. Some are made using a newer technology – mRNA, others using existing technology. But let’s also take a moment to remember that the mRNA isn’t completely new, as this article from 2018 illustrates. The reasons we get a vaccine is not only for ourselves (protecting us from severe illness, death etc) but also to contribute to herd immunity in our world. Herd immunity saves lives. Most young children don’t have all of their shots, and depend upon others to have shots.

Herd immunity occurs when a large portion of a community (the herd) becomes immune to a disease, making the spread of disease from person to person unlikely. As a result, the whole community becomes protected — not just those who are immune. Often, a percentage of the population must be capable of getting a disease in order for it to spread. This is called a threshold proportion. If the proportion of the population that is immune to the disease is greater than this threshold, the spread of the disease will decline. This is known as the herd immunity threshold. What percentage of a community needs to be immune in order to achieve herd immunity? It varies from disease to disease. The more contagious a disease is, the greater the proportion of the population that needs to be immune to the disease to stop its spread. For example, the measles is a highly contagious illness. It’s estimated that 94% of the population must be immune to interrupt the chain of transmission.

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/herd-immunity-and-coronavirus/art-20486808

More information about just the vaccines can be found here https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html and here https://vaccines.procon.org/

As someone who has multiple health conditions, I am immune-challenged. For folks like many of us here, with mast cell issues, The Mast Cell Society has been giving constant updates for us about the safety. But I have friends who have little to no immune systems due to cancer, genetics and more. Some of these people are medically unable to get the vaccine under direct orders from their medical team. Those are the people I get my vaccines for. Yes, I get it for myself, but I also get it so that the people around me can be safer. I also choose to wear a mask around people inside a shop or anywhere I don’t know people. I do these things so that I can live a life that is full and happy – but I also do not want to be stupid. I am careful. I also don’t want to be the one who causes someone else’s death. And honestly, without the vaccine, you could be causing someone’s death or serious damage. Can you be okay with that? Truly okay with knowing that throwing your tantrum over individuality and sometimes utter nonsense science about “breathing only CO2” wearing a mask…could directly be how someone dies from contracting this disease?

I am just apoplectic at the lack of care for other people’s lives. How can you say that your religious beliefs in G*d will save you? Look at the bloody statistics!!! Look at the fact that more than half the ICU beds in the entire US are full with COVID cases. And those cases are from unvaccinated people! The CDC posts an update on data every day – I have posted it as the second link.

https://www.wired.com/story/the-dam-is-breaking-on-vaccine-mandates/?utm_source=pocket-newtab

https://covid.cdc.gov/covid-data-tracker/#county-view

Please think about the others around you. Important surgeries, such as ones for cancer, orthopedics, so called “elective” surgeries are being postponed all around the world. For someone with cancer, this means their treatment may be delayed months or years. And how scary is that? Because beds are not available because people are in the ICU with COVID!

I am not a religious person. I choose not to write G*d as I personally do not have a relationship with religion. I believe in something more like Buddhism where kindness is what people are to follow. I try to be kind in all things – this is the first time I truly can not be kind to people who refuse to vaccinate. I won’t interact with them, I won’t be around them, and I will still continue to mask around people I do not know.

So I started my meds Friday, like a good patient. By Sunday, I was running to the bathroom just to run my hands under cold water to stop feeling the itch. By Monday? I had an eruption of blisters on both hands to the point that made them completely unusable for work. As each day went on, more blister clusters would show up. Then they started to go down my arms, on my torso, and the top of my thighs. I could only sleep if I had ice packs on my hands to numb the itch. My PCP added Hydroxyzine to the mix, but the blisters kept coming. Is not only were the meds not stopping the massive flare, but I can only guess at what the trigger was this time so I don’t actually know what to avoid.

I haven’t eaten any new foods. It has been warmer than usual here, so maybe it was the high humidity and heat of outside? I got some plants from a friend a few days before the flare started, but nothing I’ve not handled before. Was it the soil? Was it the canna lilies? Was it the mexican petunias? Was it the papyrus? Was it just the fact I was sweating? Was it the pennywort I was pulling up? Did it have nothing to do with the new plants? Was it stress from being busier than normal at work? Was it one of the soaps we just got in at work? I honestly don’t know for sure. I’ve assumed it has to do with the gardening at this point because it is something I can act on. I can wear fabric gardening gloves and just choose not to actively participate in gardening….as much as that’s a heavy blow to my soul.

But That’s Not All Folks!

All of that is incredibly frustrating. But that’s not the whole of the story either. Because while this is going on, I don’t feel sick. I’m not running a fever. I’m not vomiting. I’m not delirious. I’m not overly tired (except for now I’m on Benadryl instead of the hydroxyzine, so I’ve only got moments of functionality in between doses).

Despite that, I can’t wash my hair on my own because the pressure on my hands sets the itching and pain in the blisters off. Showering at all is….uncomfortable. It’s got to be cool water, and I can’t stay in there long but it also is hard to hold anything to scrub with. Even getting dressed isn’t something I can do easily because bra’s are terrible to try and put on with hands that aren’t functioning well.

And of course stress makes any mast cell flare worse, so you’re not supposed to stress about all these things while the mast cells are attacking your own system FOR NO GOOD REASON.

Okay…so…the reason is that I’ve got Ehlers-Danlos and it often comes with Mast Cell Activation Syndrome and that means that the mast cells get over ambitious after being triggered and start attacking healthy tissue because that’s how auto-immune disorders work. I know this. But I still don’t consider that a GOOD reason for this nonsense.

Add to this mix that it’s difficult to find a doctor that is easy to get an appointment with during a flare AND knows about mast cell diseases? I am lucky to have friends that are knowledgeable as well as doctors that are willing to listen to me when I suggest something. But they aren’t specialists with mast cell issues, so as amazing as they are, they’re shooting in the dark a bit as well. The last time I had a massive flare like this? I was sent to a dermatologist that was supposed to be the top of her game. She looked at me and told me it was poison ivy and that she could tell I don’t have mast cell issues by looking at it, then proceeded to insult the rest of my team and tell me I just wanted to be special and needed to accept it was just run of the mill poison ivy. It wasn’t poison ivy. Despite the fact I react to the most benign things…I don’t react to poison ivy, and wasn’t around it anyway. Despite the fact I had a steroid injection that should have helped a poison ivy rash go down…and it did nothing. Despite the fact none of the blisters were weeping or anything like a poison ivy rash. Which just adds to the mountain of stress as you’re just trying to find some relief and get back to a life.

You Are Not Your Productivity

And this last one, is the fight against my own mind. That because I don’t feel like I’m on death’s door…I should be more productive. I should be able to work. That falling asleep because of taking Benadryl is somehow a sign of weakness. That I’m letting everyone down by being in the middle of a flare and not knowing exactly what caused it and how to fix it immediately. Like I’m somehow a failure for this.

Yet, in a small moment of clarity, I recall a recent interaction. I met a wonderful woman at work that was wheelchair bound. She was telling me all the things she used to do before her failing health stripped it from her. I shared a bit of my own story and things I’ve lost. She looked at me with tears in her eyes, and asked if I ever feel like a terrible burden and useless. That if she couldn’t do things she loved and make gifts to bring smiles to people, what good was she anyway? That if she had to rely on her husband to do everything for her, wasn’t she just a burden that he’d be better off without? (Now, her husband was also shaking his head and giving her the stink eye during this, bless him. And you could feel the love from him)

I had told her, fully believing it, that she wasn’t worthless. She made my day. She still touched the lives of people, and that mattered. People she made things for in the past, I’m sure still look back and are touched. The fact that she touched so many lives is incredible. So just because she’s not doing the same things she used to, she was still a bright light that was needed in the world.

I’m not one to say that the universe has everything planned, but I think we needed each other. Because as I’m facing all of the frustration from my mast cells not being able to fully calm down from a tantrum, and feeling utterly useless…I remember this shining light of a woman. I still have to fight my mind, because it’s an ingrained thing that I’ve had beaten into my head. But it has helped.

But What About Solutions?

Well…I’m just now, over a week later, looking like I’m turning a corner with a shift in my medicines. I’ve also been in contact with a company that is run by an incredible couple called Dirty Unicorn about making a hand salve for me that may be better than the bar lotion I have currently. I’ve just ordered some soap from them because I love the scents they use.

I let my cat cuddle me and act like a fuzzy nurse. Just having him around to pet, feeling his weight against me, is soothing.

I talk to friends that have an understanding of what I’m going through. We talk about the problem, touch base, and then have a conversation unrelated to medical things.

I keep my primary care doctor informed of the progress or lack thereof as well as any changes I’ve done myself.

I have alarms set on my phone so I make sure to take my medicines on time and so they are apart enough to not interact with each other.

I put on meditations to help me rest. Even if the meds are making me sleep, they help my mind go to a better place while drifting off rather than focusing on the depression downward spiral.

I let my other half help me with tasks that I’d rather be able to do myself.

I try my best to be kind to myself, and reach out to friends that can give me a mental slap if I need it. Because this is stressful enough without my own mind making it worse.

I don’t respond to calls or texts unless I feel up to it, even if I can do speech to text. Because I wouldn’t ask anyone to stress themselves out and make their flare start back up, I won’t let anyone else do it to me.

And I just try to do whatever I can in the moment. Because there’s no way around it…the situation sucks. It’s horrible itchy, incredibly painful, and utterly miserable. I accept there’s nothing I can do to make the situation not suck. But that doesn’t mean I have to beat myself up over it at the same time.

I take the time to speech to text something like this just in case it reaches someone that needs to hear they’re not alone.

Also….I made some memes out of spite…because if you can’t make it better…make fun of your situation and spread the dark humor.

I liken trauma to dropping a glass. Depends on the height from which you drop the glass, how badly it shatters. If it just slips from you hand and falls to the floor, the load is not too great, it may just have a couple larger broken pieces that can be more easily repaired. However, if you dropped that glass from a six-foot ladder, the fall to the floor will cause it to shatter into countless pieces. Pieces that must be picked up shard by shard to avoid further injury from its incalculable number of jagged edges.

Much like collecting each tiny glass shard from the shattered glass, picking up the pieces and mending layered trauma can be precarious, taking time and diligence. With the right help and tools in your arsenal, it often takes rewriting old scripts within the walls of our inner world and re-envisioning a different outcome in our corporeal world that has cut our feet far too many times. Healing is messy and the hardest part is that science and faith both agree that one cannot heal from trauma in isolation. It takes a leaning-in and reflective vulnerability to heal from our deepest cuts … when our most primitive reflex is screaming at us to dawn our protective ‘armor,’ and run. Sometimes even from those we know are our ‘safe’ people. No one said trauma made sense because it does not.

Every now and then, we have a chance to re-write an old traumatic even through a different lens when a similar set of circumstances arise, reminiscent of the inciting event(s). I have been doing intensive trauma work, both holistically and allopathically, for a couple of years now. I am blessed with some amazing practitioners who saw an opportunity for me to rewrite some of my ending through several upcoming, typically triggering (and often avoidant) situations that bring to the surface a heavy and familiar hypervigilance. My glass fell from a rather high ladder long ago, it shattered, and there is much to be re-written. In this instance, the combination of gender and role seem to represent five hundred of my thousand old, layered cuts in a billion little ways. In a nutshell, I have numerous chronic health challenges, significant medical trauma, trust issues with males (from a young age) and have had significant traumatic events with certain types of male healthcare providers (i.e., neurosurgeons, therapists, et al).

As fate would have it, I have a rather unexpected upcoming neurosurgery. Ironically, with a male neurosurgeon and I am working through the layers of PTSD that surround it, with a male therapist. They both seem to be wonderful humans and more importantly, safe. I think the universe is telling me this is my chance to right some wrongs and heal my soul, but, the choice to do the hard work is ultimately mine. What if facing my pain and fear through a different lens IS my chance to write a different ending this time? My chance to slay the dragons that relentlessly echo in my head and block my path forward toward a whole-hearted life? To quiet those, “Little Earthquakes” a bit more?

To change our respective stories, we first must do what feels like the impossible … we must show up and be seen. No matter how messy, bruised, battered, afraid, and tear-stained we are; no matter how hard it is. We MUST lean in and show up to move through it. That is not easy stuff.

Throughout this upcoming surgery and its subsequent recovery; I will choose to show up and be seen, knowing it will be uncomfortable and require a much higher level of awareness, vulnerability, and the ability to challenge old feelings of abject shame while quieting the internal raucous of past abandonment issues. This upcoming journey feels tenuous and daunting, but I think it is supposed to. If we stay comfortable in our fear and do not try to courageously peel back the layers and rewrite the stories that caused so many of the tiny cuts, we will never be able to change our ending nor help others change theirs by proxy.

My point being, take the chance to heal some of your cuts if the opportunity presents itself. The jacket will feel too tight at first and but when you see a chance to re-write a previously painful ending and you are in the right place and space to do so … seize it.

Hurt. Heal. Grow. Share. Repeat.

-S. Merek Southwick, PhD

Friendships, in general, can be ephemeral. They can wax and wane and sometimes disappear with age, changing locations, and just life in general. I am very lucky to have two friends who happen to be sisters that I have known since we were 5 (well, the younger was 4). They are more like my sisters, and we share our joy, pain and laughter often. Many other friendships came in high school, a few in college (I didn’t have a good experience in college, which I will go into in a future post) and more from jobs later in life. While it’s normal to gain and lose over the years, I have lost more friendships than I would like to admit in my 7 years of chronic illness. It’s a strain on the dynamics of a relationship of any sort when you can’t go out or visit as often as they’d like. Constantly hearing that the friend you want to spend time with declines time after time, I’m sure it can make them feel unwanted or under appreciated.

I’ve made the decision to accept that it isn’t my fault that people move away from my friendship. These have not been easy things to accept. I miss the shared history, the fun times we have had. It isn’t easy to accept the loss of friends, but after I’ve reached out multiple times and don’t hear back, then I have to accept that they’ve moved on. I’ve cried over these friendships leaving me, but I also know that I didn’t do anything wrong. I do try to talk to my family and friends when frustration strikes to discuss and find a resolution. I ask people to tell me if I do something they don’t like at the time so that we can work through it. Please remember that these are MY experiences and feelings, and can be very different than someone else’s. The friends I have retained still ask me to do things, even if they know I may cancel. They are okay spending time on the couch just being in the same room. I may still say no, but it is the ACT OF BEING ASKED that makes such a difference to me, and my friends. Just the simple action of letting us know that we are still accepted and welcomed in their space. That we are wanted. It’s such a basic thing yet something most often forgotten, because they assume we will say no and that no means we don’t want to be included anymore.

Being asked means you feel included, even when you physically can not do it. To me, that is what is important. And when I do attend something, I need to build in recovery time. Normally for ME that is a day, but I know people that for every hour of being social, they need a day to recover. So if they go to a 4 hour event, it can take 4 days to recover.

It is the rare occasion that people see my pain and challenges for themselves. I have other friends who use aids sometimes, and others who are full-time wheelchair users or other types of aids. These aids, no matter if we use them occasionally or every day, are our lifeline to the outside world… but it’s complicated. This is why zoom was so important. The pandemic has done some good things in this world; allowing people to talk via Zoom, FaceTime and other apps has offered a world of accessibility that people like me would otherwise not have the energy to accomplish. This is something that needs to continue long after Covid passes into our memories, because it’s been a game changer for many people.

Remember that at the end of the day, friends can be support, become your family or also leave our lives. All of these things are acceptable, it is just how life can change all of us. And our lives may be a struggle, but unless someone tell us, we may be missing what the friend is experiencing. No one can walk in our shoes, nor can we walk in others. Kindness is the important thing in all aspects of my life, and I try to help others by being kind about what I may be missing.

Derek Redmond hurts himself, and he refuses to quit, even though his face clearly shows his agony. His father RUNS to him and helps him, sometimes forcefully shooing the officials away.

Life for a Zebra can be like these runners. We come out of the starting gate with our peers, and at some time in our lives, the injury slows us and eventually, our peers are so far in front of us that we are straining to even see their dust. We lose friendships. We lose jobs. We lose our livelihoods. Some lose almost everything.

For me, my mom is like Derek Redmond’s father. She holds my arm and supports me while I hobble along attempting to run the race of life. She comforts me when I cry, shoos people away who may doubt my pain and issues, and generally helps me keep going. I want to finish this race of life in my way – helping others and staying as strong mentally as I can.

Mental strength is HARD. Imagine that you spend every single day fighting insurance companies for approval for every thing you need, talking to multiple doctors about the many issues that plague you, trying medication after medication to manage conditions, trying to explain to anyone that yes, you agreed to dinner but the day was hard and now you need sleep. All of these things are draining. Most people find just one of these things hard, so multiple things in a day, and every day, feels like that Olympic runner.

Zebra (or any chronic condition) life is HARD. It means you may not be able to work, but you work every minute of the day to function. Sometimes just getting out of bed for an hour is work. Sometimes the victories in our lives are so minuscule to other people, and so gigantic to us. Those victories range from making more than one meal a day (cooking is hard due to standing and repetitive motions with the joints) to walking a block to getting a much needed medical test done. To some people, these victories are meaningless. To me, and many of my Zebra friends, they are huge. Some days, one of these things is enough. Some days you get multiple things done, but pay for it the next day. Those are days I just say to myself “I am strong enough to weather even these bad days”. I know that my words can seem trite to others, but it works for ME. But what works for me, may truly hurt others. That is the nature of a Zebra life – we are all covered in different stripes, and we all struggle in different ways. I think everyone has a different journey to go on, and what works for me, may not work for anyone else. This just happens to be MY way.

This is a quote from the Derek Redmond interview. Derek’s father came down from the stands and ran alongside Derek. As Redmond later recalled:

The old man put his arms around me and said, ‘Look, you don’t need to do this. You can stop now, you haven’t got nothing to prove.’ And I said, ‘Oh, I have — now get me back into Lane 5. I want to finish.’

Derek Redmond, 1992

I want to finish the race, and I have to prove to myself that being a rare disease person isn’t the only part of me. I am also a friend, an aunt, a daughter, a fighter, and a chocoholic.
Thank you all for reading my first note.
ZebraSarah