I am not disabled anymore

Life is not roses and flowers for anyone all the time. It is most often an uphill battle for some on a daily basis. Even those who may seemingly have things easy, still struggle with family issues, death and loss, mental breakdowns. You name it, and there are thousands of examples of folks out there going through pretty much the same thing as each of us. Yet sometimes despite the knowledge we all have that things are never perfection, so many of us get down on ourselves for not being what we had hoped we would be. We are sometimes embarrassed about our lack of accomplishments, and might wish we had done something different with our lives. Maybe others even wish that about us. Despite what health struggles, confidence challenges, depression, bullying, abuse or addiction you might be struggling from, you all need to look in the mirror and realize the only person who is ever holding you back is YOU. So if you feel sorry for yourself, look within. If you feel your confidence needs a boost, dig deeper. If you think you’re above anyone mentally, physically, or spiritually get on somewhere and check yourself in the mirror. And most importantly people practice what you freaking preach already!!!

You see, no one’s story is harder or easier than yours or mine. We are all perceiving things our own way in our own right, living our own lives with our own unique accomplishments, struggles, success, and failures, and we need to stop placing judgement on each other AND on ourselves. This is the story of self awareness. It is a story of judgement, sadness, acceptance, and triumph, and it begins with the realization that I am not a disabled person anymore.

My name is Lynn. Some still call me Crystal, my first name. But Lynn is my preference these days. There are so many details I will need to leave out of this, or they would potentially bring harm to others, so I will do my best to avoid directly targeting any of my abusers whether they have been in my professional or my personal life. People often tell me I speak in metaphors and innuendos, and I do for sure as an artist have my unique forms of communication. But the reality is, I don’t have to point out details about who said what or who hurt me or my feelings and all of that, because if you are a hater, then my love you already know about yourself. Chances are, you’re just too afraid to look in the mirror.

So this will not be about the times folks have judged me for “dating black men” CORRECTION: being married to and having children with black men (although they always want to say dating just do diminish me a little bit more for having beautiful biracial children and being proud of my love for all races). This will also not be about folks who have told me I was lazy, ghetto, or low class because I went onto disability at age 40. This will not be about the doctors, nurses, social workers, or counselors who have judged me for my children being on medicaid. This will not be about the family or friends who have placed me into a category and told me I am raising their taxes because I receive social security too early. But rather this will be about a strong individual. An artist. A creative spirit who will not remain silent but who will speak up. This is about a person with a hidden disability who decided one day, that was a load of garbage.

You see, dis abled comes in many forms. But I decided that I am not ONLY unable to do things that I used to do very well. Maybe I am not as able as I once was. Maybe instead of progressing as a pianist, guitarist, vocalist, and songwriter I did not advance as I expected of myself. I am still able. I just might hurt doing it for long periods. I can still do things. But I might have needed to be placed on Medicare earlier than I wanted to be. Maybe I didn’t win competitions, and my timing has gotten delayed over time. Maybe I shake and drop things on bad days, can’t move or get off the couch on others. But I HAD to stop accepting that I am only a disabled person. So I choose not to be disabled anymore. I don’t want to be judged and told I’m committing a crime because I handed someone my insurance card, and they replied with, “this can’t be a real card because there is no way you’re old enough for medicare”, proceeding to send me a bill for the FULL amount, and ignoring the insurance. I don’t want to be looked at funny or told I am doing something wrong, because I keep trying to get better, and am forcing myself to do things I’m not physically capable of at the moment. I’m tired of feeling guilty for being sick but looking like I’m fine on the outside. Because I force myself to do things, and need to stay in bed a few days after. But my kids want to experience life. So I cannot feel sorry for myself just because my pain won’t ever go away. That is not going to benefit anyone.

Being disabled and accepting that you’re going to need medicare in order to survive a little longer is a hardship many will never have to endure while still raising children. Reading about life expectancy and understanding that I might not make it to see my kids have their own families is a harsh reality check, some of us do understand all too well. Many will be denied disability over and over, and will be told despite their diagnosis they are not disabled. Many of those people won’t be able to afford their treatments, checkups, or extreme hospital trips, because we don’t earn enough money to afford to pay the medicare or medicaid rates or we won’t have a home. Being disabled is disabling, and being labeled as such even worse. Trying to explain to your children that they won’t have a college fund because mommy doesn’t work enough is not only heartbreaking, but would be downright tragic to some. And as someone who has always believed it is my responsibility to pick myself up by my own bootstraps, I certainly felt that it was. But I now realized that being disabled gave me the health coverage I needed to get my PT (that I never qualified for prior ). It brought me to doctors who helped me figure out my pain and reasons I had all of these episodes, and to a diagnosis of a condition I had never heard of, and it allows me to get checkups I need to prevent some of the serious things that can occur with vEDS that can cause loss of life before age 50. It’s easy to look at that and feel sad when you look into your mirror. But why not say, not today!

Many of us have never had a trust fund. Many of us had to take out dozens of thousands in loans just so we could go to college. Many of us have worked and tried to push through despite the daily pain. As a 40 year old relearning how to walk I really did feel sad for myself. But mostly there was guilt. I was not able to keep the nonprofit up and running. I tried to work in another industry but exhausted myself physically, and my kids’ future did not look very promising as I couldn’t keep up alone. They were on medicaid, and almost every doctor we went to ignored us, because we weren’t of the preferred class. But that would cause me to push harder to find a doctor who cared, despite how we got our insurance. I decided I was going to change my boys’ reality If I was no longer seeing myself as disabled, they could eventually have insurance that I AGAIN paid for. They could experience vacations, and maybe have more than a few pairs of clothes, and maybe they could also get some of the same things other kids do like phones and game systems. I decided I want them to be like the other kids. Not suffering with a mom who is disabled yet does’t look the part.

So instead of feeling sorry for myself for walking the wrong way, being nauseated and throwing up all the time, suffering from heart palpitations, fainting spells, high blood pressure, joint subluxation, ligament tears, swelling, hernias, thyroid malfunctions, osteoarthritis, spine movement, degenerative disk issues, and the list goes on, I decided NO. You are NOT disabled anymore. So, I try to get to PT. I practice my exercises, unless its a day that I just cannot. And I allow myself to get slowly mentally stronger so that I can feel well , and confident enough, to start teaching again. I may have needed to accept that I can’t play guitar for longer than a few songs, and the complicated sonatas and such might hurt too much to sustain an entire piece, but I still have value, even if I am not as “able” as I used to be. Maybe I might not have a very long life expectancy, and maybe my symptoms are never going to go away. But I decided that why not push myself even more, because what have I accomplished if I have left my children with nothing but my student loan debt and a memory of a mom who couldn’t ever do anything or go anywhere?

Do I still have to wait long hours in emergency rooms to be sure I don’t have aortic tears or enlarged valves, ruptures, torn intestines, bleeding ulcers or any of the other scary things that can happen when you have vEDS? Yes I do at least a few times per year unfortunately. Does it take me months and months to recover from ulcers, infections, and even minor viruses? Yep. And sometimes I have to delay working for a little bit. So all I can do is my very best, and my type A personality has struggled to accept this. I HATE lazy. When I am sitting or even napping I used to find that I was wasting time!! I could never stand to see others nap in the middle of the day, because again, there is simply too much to accomplish in a day to waste time on rest! But I had to tell myself, “not anymore.” So as I return to working and loving my music, art, and teaching again, I take myself at whatever pace I am able, and I continue to tell myself every day that my own pace is okay. It is enough. I am still worthy of having a life, even if I can’t pull the 60 hour work weeks I used to as an entrepreneur in my 20’s and 30’s.

I wanted to remain down after hearing all the harsh words folks have said about me during this challenging few years of being “unable”. So in the words of my beautiful kids, I had to tell myself, “not today”. As soon as I realized that, I no longer felt sorry for myself, and I now force myself to play / practice a couple times per week. I continue to practice through the pain, but am learning to balance by stopping myself when it hurts too badly. I am beginning to work, through the episodes without canceling even when I am sick for months. I am not financially where I need to be yet, but I will keep writing. I will keep singing. I will keep playing and will soon start performing again. I’m going to live it up. And one of these days maybe I will also get cleared to go back to they gym!! Because today I look in the mirror at myself, and I say, “I am not disabled anymore”. What do you think you would say if you looked into your mirror?