Someone I know via a Facebook group has a friend who’s in the hospital recovering from a car wreck that has turned him into a paraplegic. This group has absolutely nothing to do with disability but she mentioned it anyway for no other reason than it’s a group full of amazingly supportive women. Even though my disability isn’t a spinal cord injury I have been a wheelchair user most of my life so I gave her my advice on how to support him based on my own 30 years of disability and the lengthy conversations I have been fortunate enough to have him with people who do have spinal cord injuries. It occurred to me this morning that some of the things I’m aware of are not common knowledge for most people so I decided to expand my one or two paragraph explanation into a full blog post because maybe there are other people who could use the information as well.
The world as they know it is over. I am not trying to be cynical or pessimistic, from the moment they got into that accident nothing will ever be the same again. They have to relearn how to get dressed, how to put on shoes, socks, pants. Everything you thought you had down pat before you started kindergarten is brand-new all over again. At some point they will probably want to hit things, throw things, etc. as long as they are not doing major damage to themselves or you let them.
They really aren’t exactly the same person you knew before the accident.Implying that you see no difference whatsoever may upset some people because everything in their life has taken such a drastic change it may feel as if you are denying the obvious and even if you are meaning to be supportive it can feel patronizing. Try something like”I know your heart is still the same and the rest is just an oppourtunity for creative solutions.”
People they thought were their good friends will suddenly disappear. They will disappear because the new reality is scary and maintaing a friendship with someone in a chair can feel more labor intensive. I’m not going to tell you this isn’t true. Everything requires way more thought and planning when you use a chair. Is that place you used to hang out at all the time handicap accessible?If you didn’t know the answer before you’ll discover very quickly that the answer is really important now Being a good friend definitly means paying attentio to things like accessability.
If you say you’re coming over do it. Remember what I said about people disappering? This is how it starts…friend says they will come hang with newly disabled friend soon except soon never comes. When friend is asked why they haven’t been around at all in six months excuses often abound working over time no gas etc. I’m not saying these things are never actual reasons but if you have to miss seeing them call and explain and preferably have a rain check date to reschedule. If they don’t do thay then chances are good you are being avoided because the friend is uncomfortable around you. Do not be that person. You may think it won’t bother them that badly but I can tell you from my personal experiance, do it often enough and no matter what your reason/excuse they will start thinking its better not to ask you to hang out because you are just going to find an excuse to ditch them.
Be prepared to become an advocate. I know no onr asked if you wanted the job and disabled folk can and do advocate for themselves but being in a close relationship of any kind with a disabled person means you will probably find yourself being an advocate at some point. For instance before Oz, my boyfriend met me broken sidewalks, sidewalks with no ramps, or no sidewalks at all, were barely a blip on his radar. The presence or absence or state of disrepair didn’t affect him. Four years with me has made it a pet peeve. Same thing can be said for service animal access. Disability can make us feel alone in a world which only begrudginly accomodates us. We aren’t asking people to fight our battles for us but rather to stand with us.
The last few weeks of 2015 were not quite what I expected. I have never been one to believe in a vast overarching destiny. I believe in the small, quiet nudges that you can almost miss if you’re not listening that whisper, “go here,” “do this,” “don’t do that,” “this is important.” I got several of those in the past few weeks. Mom had been watching clips of an Australian comedian named Adam Hills and something told me to look up his longer pieces. Turns out the guy has an artificial foot because he was born without one. That definitely piqued my curiosity and so I sat and watched everything of his I can find. He doesn’t tell jokes so much as humorous stories and he was telling how he metthe Dalai Lama and made him laugh by refusing to tell him a joke. The Dalai Lama then took the microphone and said that people who have microphones should use them to say things. I was totally stunned. So many people who have been blessed with the opportunity to have a microphone whether it be a literal one or not say absolutely nothing, reality TV is all the proof I need of that one. A blog is also a microphone, amplifying our voices to be heard almost anywhere. Makes those words count, talk about the hard uncomfortable stuff that you’d rather shove in a drawer or walk past and pretend you didn’t see.
The second thing that happened to me at the end of last year is that I started talking to a friend who I had believed I would never hear from again. By all rights I should have slammed the metaphorical door in his face but there was that whisper again,don’t do that, this is important. So we’re talking again this was one important caveat that should help us avoid situations like the one that caused us to quit talking to each other. We always speak truth, even if it is hard, painful, or unpleasant for the other person to hear . Speak Up. Speak Out. Speak Truth. Those three things are the only way we can ever hope to change anything for the better.
Some call grief a process but that word implies that grieving is finite and has a definitive end. In my experience grief (specifically from the death of a close friend or family member) tends to behave more like a shadow. Some days it is bigger and more noticeable than others but once felt it is always there. It is that song on the radio that you either can’t stand to hear or almost break the speakers listening to as loud as possible. It is the book that goes unread on the shelf but woe unto the person who suggests giving it away. It is the quirky things you insist on doing or knowing that surprise other people. For instance I lost a good friend to leukemia, he wore a hat constantly to hide the damage chemotherapy had done to his hair. Now whenever my hair is long enough I don’t get a professional hair cut and donate my hair to a charity that makes wigs for cancer patients. Recently a friend of mine who had a long list of food allergies died (from something totally unrelated). Since I met him I noticed that I became more likely to remember if people around me had an allergy of any sort. Also if I know someone is going camping etc.: I always make sure they are aware of the warning signs which herald Lyme disease. If I can’t make the shadows that follow me go away I can at least make them smaller.
“One in a blue moon,” we’ve probably all heard the phrase at one point or another in our lives. Here’s what I thought of the last time I heard the phrase. Once in a blue moon you find a friend who seems to be able to weather any storm, who always seems to be able to land on their feet in spite of whatever the world throws at them. The scary part of this is that eventually everybody’s luck runs out. I have a leather bound illustrated copy of all of Shakespeare’s works, including the sonnets. It was given to me on semipermanent loan when I was 13. The friend who gave it to me told me graduate high school and learn to navigate college successfully in spite of my limitations. I have yet to find an adequate phrase to describe my relationship with him or what he meant to me. He passed away this June after a prolonged struggle with Rocky Mountain spotted tick fever, Lyme disease and several other illnesses on top of those. I have stopped crying every day so I suppose that is progress even though it does not feel like very much progress to me at all some days. Someone once told me that a person only truly dies until the living stop remembering them. I will continue to tell the stories of those who have gone before me because I don’t ever want to forget. The volume of Shakespeare now sits in pride of place on my bookshelf an unlikely reminder of an unlikely friendship.
Yes, I realize National Coming Out was a few days ago, bear with me.
When I was 14 and the internet still consisted mostly of AOL, I met DamianKane* , gay elf knight. His profile could, and probably did double as his D&D character sheet, which is why we started talking in the first place. That one conversation spawned an almost 3 year long friendship during which he taught me a basic rule of writing that has always proven true, for me at least. A manuscript is never done. A writer does reach a point where there are satisfied enough to publish it but even years down the line will probably find something they could have done better. Damian was the first person who asked to play in his D&D runs back when online gaming consisted cf typed descriptions in a private chat room and zero graphics. He was also my first openly gay friend. I say he was openly gay because he was with me, however he was in the closet to most of his family who would have ceased helping him pay for college and tossed him out on his ear if they knew. We lost touch years ago but I still think of him often because he gave me my first really lasting piece of writing advice. I hope wherever you are you feel free enough to be yourself and find the you deserve.
When I set out to write this post originally the topic was on a completely different subject. However before I had even written the first paragraph something changed. I began talking to a friend of mine who I’ve known since high school, to say that neither one of us is where we thought we’d be at this point in our lives is an understatement. I remember when we were in high school, we all swore to keep in touch no matter what life threw at us. I am sad to admit that I’m just as guilty of not keeping that promise as anyone else. I am sadder still to say how many friends I believed would be there to the end turned out to be nothing more than fair weather friends. Some of us had a rough way to go after graduation and as I watched people turn their backs on the people they had promised to stand behind I grieved. These were not the people I believed them to be. I wish I had known then what I know now. If nothing else I wish I had known enough to try and shoulder some of the pain. I know now that true friends abandon you just because being a friend becomes difficult. A true friend does not condemn you for falling into a pit of your own making but instead lends a hand to help you out of the pit and stays there for as long as you scratch, claw, and fight your way out. A true friend is there to clasp your hand and pull you out of the dark, to stand linking with you at the light of day. I did all I could in high school but that was precious little indeed. I hope now, being older and knowing things I didn’t know before I may become a better friend, one who will face a darkness that is not their own with an outstretched hand knowing that somewhere within the darkness there is a friend.
I have heard that phrase so many times I think I’m sick of it. Perhaps I’m looking at things from the wrong angle though. Yes I just got broken with, and yes some days it hurts worse than a free bleeding knife wound to the gut. But I know it wasn’t my fault . He told me that before he left. I can take comfort in that. I also take comfort in the knowledge that I still have my best friend. This man is my rock. In the past three years has seen me through some pretty rough things which involved more emotional upheaval than I care to think about. He is still here so all cannot be lost. About two weeks before my house of cards decided to tumble something else happened. My mom and I happened to stumble across a newly formed local program whose aim is to teach disabled people how to drive a horse and cart, something I’ve wanted to learn most of my life. Long story short, I’m now fishing for things to occupy my time while I wait for the money to come so I can officially call this beautiful miniature horse mine. Plus I’m finally getting a bike I can user after 12 years of wishing for one. So my life is not destroyed, just reordered.