Thursday, June 15, 2017

Accepting Failure

    When living with a chronic illness,especially a degenerative one, one of the hardest things to get used to is the gradual loss of abilities. It can happen overnight. One day you open jars, the next you're just too weak. Or, it can happen gradually. Like when you notice you're carrying less and less on each trip into the house after shopping. This is the nature of of chronic illness and it is probably the one thing that our friends and family understand the least.
    Take the recent vacation I just took with my husband. (Recent as in I'm on the plane flying home as I type!) Being that I have been fighting my disease for 21 years, we have been on many trips together requiring air travel. Yes, it's not easy for me but I know what I need and so does my husband. He's more than willing to pick up the slack.
    But this time was different. This time I failed.
    Usually, I am able to walk to check in, rest, walk to security, go through the disability line, rest, and get to the gate. Even in larger, busy airports I have been able to accomplish this. But today at McCarren Airport in Las Vegas, I did not. I made it to the security check point and I crashed. The line was so long and I was so tired and dizzy and achy that I called for a wheelchair. And then I cried.
    I know that doesn't sound like such a big deal. I have a condition that causes pain and breathing issues and now I have near constant pain from back fractures. But mentally, I just wasn't ready to take that step yet. And I'm still struggling with it.
    Now I know that this isn't really a failure and that by using this word, I am being exceptionally hard on myself. But the reality is that to us, the chronically ill who are used to being able to do certain things, being able to meet our own expectations is vital. In our minds, it means we're still winning. Even though we know that some day we may not be able to do what ever it is we are attempting, as long as we can do it that day, all is right in our world.
     So back to my failure. I know that year after year, I will lose my ability to walk longer distances and stand for long periods of time. I had actually prepared for having issues with this in and around Vagas itself due to the heat. But I did well with my walk, rest, drink strategy so it did not occur to me that the airport would take me down. But it did and I have to face it. I have to accept my failure.
     However, in doing so, I will also be accepting myself. My continually evolving physical self. And as a chronically ill person, that is a necessary process. Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that's OK. Because it's actually a process everyone should go through as they age. It's just that healthy people can try to avoid it or put blinders on while we cannot. And truthfully, ignoring these changes can be really dangerous.
    So although I'm still not fully on board mentally with my body’s decision to shorten my walking distances again, I am dealing with the realization that I am at another stage in my disease process. And I am OK with that. That's how this all works. I knew that from the beginning. And at some point, I'll realize it's hard enough fighting this monster of a disease, I need to stop fighting my mindset about it as well. After all, that wheelchair ride was pretty darn restful! And my attendant was a riot! (They didn't let my husband push me.) So in reality, what's wrong with making my life a little easier and not putting my body through quite so much when I travel?
    I want all of you out there who question yourselves when you need special accommodations or worry about how others perceive you when utilizing such accommodations to just stop. Put all that down. We are all fighting whatever illnesses, conditions or disabilities we have already. Physical or mental. It's time to stop adding unrealistic expectations and guilt on to that as well. Deal?

Saturday, June 10, 2017



Are There Rules To Disabilities?

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    So right now, I’m on vacation in Las Vegas. I know, lights, action, celebs… (Seriously, James Woods and that guy from ‘Coach’ are here!) But this isn't about here. It's about getting here.
    You see, at this point in life, I've sustained enough damage from my chronic illness and fractured vertebrae from medication side effects, that I need to wear a back brace and utilize a cane when travelling. Hardly earth shattering. And, at *cough* 51 *cough*, I'm still on the young side to be needing concessions. So why am I even bringing this up?
    Because it became an uncomfortable issue on a plane ride on the way here and I needed to handle it.
    The backstory you may not know is that I am over 6 feet tall. As a woman, I get looks. As a plus sized woman, I get whispers. And as a plus sized woman with a cane and a back brace, well… silence speaks volumes. And in the case of fitting into arranged seating? I just don't. But not because of my weight, because of my legs. And now, because of my brace.
    On an airplane, this comes into play because there is a thing called pre-boarding. It allows people with disabilities or injuries to board before others so they don't have to wait in line or climb over other passengers to get to their seats. I started using it on our last vacation. It helped so much with my pain. But his year, we hit a glitch: wheelchairs.
    You see, I can still walk well. So I do. Some are not as mobile and utilise wheelchairs to get from gate to gate or even to their seats. I was raised to play by the rules and wait my turn patiently…  Apparently, not everyone thinks the way I do. I was denied a seat I needed, by chronically ill women like myself, because they choose to save seats for family members who didn't need them. (Pre-boards get to bring one person to help them. Others sit elsewhere.) I was in tears.
   Thankfully, the son of the woman ahead of me switched seats so I could have the room I needed to stretch my back during the flight. She, however, complained loudly stating ‘it’s only an hour and a half flight, what’s the difference?’. She clearly saw both my cane and back brace. My issue was not invisible at that time. And I’m not disputing her need for pre-board. Her joints were a mess. I'm guessing RA. But she stood 5 foot 4, if that! Did she need the front row leg room and did I have the right to question that?
    The answer is yes, I did. And in the right situation, so do you. You see, I wasn't questioning her or her pain, as she so loudly did mine. I was asserting my need for the one thing I can't get anywhere else on that plane, leg room. While my reluctance to “cut” ahead of wheelchair users was due to respect, I was undermining my own need. A need they might not even have! So after speaking to the gate attendant and explaining my situation, I got seated first. I got leg room. And I got to fly without worrying that I would get to my destination in too much pain to enjoy it. Which is a right we all have no matter what our disability or illness is.
    This seems to be something most of us forget. Not just when travelling, but in everyday life. Do you need to be the one to do that load of laundry because hubby or soccer star needs a shirt tomorrow? Sure, I always did, until I couldn't. I'm asking you who are younger and hopefully healthier than I, do you NEED to? I NEED leg room to be pain free and get it now.
   But, I also PREFER a window seat. I don't need it, however, I sit there whenever I can. But if someone needs that window seat more than I do, I have no problem moving. Because we need to support each other just as much as we need to stand up for what we need individually.
    I don't want to ever cause anyone more pain than they already go through. I get it. I'm right there with you.

                So let's keep standing together, OK? Or sitting…  Whatever!