Living with a disability is no one’s idea of a cakewalk, least of all the disabled person. People who meet me on the street probably characterize me as happy and well-adjusted in spite of my difficulties. They see that because it is the face I work hard at projecting. They don’t see the antidepressants I’m prescribed, they don’t know that because I can’t drive it took me more than two weeks of bartering, planning ,and rescheduling to take this trip at all, even though it’s just to Walmart or the local mall, they didn’t see the frustration of having plans moved back for the third time in as many weeks. All they have seen, all they will ever see, is a polite, engaging woman in a wheelchair accompanied by a golden retriever and Australian Shepherd, willing to answer the same half-dozen questions she was just asked not five minutes ago by the people ahead of her and the check out line.
Sometimes keeping that up is the hardest thing I do in a day. So why do it? For me at least, the answer is simple. I keep the façade up because most people can’t handle the truth, it would either frighten or depress them or both I am not some celestial being without fault come down to cast some angelic light on those around me. Both my parents were military and my mother once lived in a Navy town, both things are quite evident in the level of creativity with which I can swear.
I have no memory of the universe ever asking how I felt about my life being seen by others as an object lesson. I accepted a long time ago that even though I don’t remember getting a vote, that was indeed how a lot of the outside world would be my life. As a kid who spent a lot of time in and out of hospitals, I went out of my way to make friends with nurses, doctors, and orderlies.I pride myself on the fact that I have never let the amount of pain I’m in dictate how I interact with hospital staff. I am no better or worse than the next person who makes for a difficult patient but I have the ability to remember that these people in the hospital did not willfully cause me pain for the purpose of watching me suffer, they are truly only trying to help. Not every person they take care during the day can see past their immediate pain and so I hope I have made their day a tiny bit easier.
Many people’s knee-jerk reaction to hearing the word disability is sadness.Statistically speaking, most people will have to deal with varying degrees of disability simply because everyone gets older. Recently my sister has started referring to disability as a lifestyle and initially I didn’t agree with it because I tend to use the word lifestyle to refer to things over which a person has a level of control and I have about as much control over being disabled as I do about the fact that I was born with brown eyes. I do have some level of control over how people perceive my disability though so perhaps lifestyle fits better than I initially thought. I do not want people to equate disability with sadness and I realize that for many people I know I may be their only reference to what cerebral palsy looks like. In fact, in my tiny town, I would not be surprised if I was the only reference to disability in general.I am naturally an introvert but will smile and talk to a complete stranger about my disability for as long as they care to have the conversation. I may have answered the exact same question 15 minutes ago but I will do it all over again. To a nondisabled person, disability is often scary and daunting, alien. If I can humanize it by answering the same questions 1000 times in a week or in a month maybe when the person in the wheelchair moved in next door they will ring the bell with a casserole in hand. If a person they work with is Deaf or hard of hearing they now make a conscious effort to speak more clearly and slowly so that person can read lips easier, maybe they even took sign language classes. If even one of those things happens to one person because of conversations I’ve had in the mall or in the grocery store then it’s all worth it I am not here to be an inspiration, what I here to do is in some small way, leave the world in better condition than when I found it
My golden retriever turns six in April. He is still extremely willing to go to work but a knee injury that he got when we lived in Colorado making it difficult for him to go up and down stairs at times. So we have decided that it is time to start training another dog so that he can retire in a few years.He is still going to go everywhere with me but so is the puppy one she is housebroken. Medical school has a saying “see one, do one, teach one,” and that’s the theory I’m using. She is not a golden retriever, I considered another one but I didn’t want to fall into the trap of expecting her to behave exactly like Gideon, that’s not fair to either of them. She will be my first Australian Shepherd. I know they are high-energy but I believe I’m up to the challenge. At this point, I would like to address something that frustrates me immensely. Service/assistance dogs are often separated into two categories owner trained and program trained. Gideon and Nekoda, (named for the main female character in Sherrilyn Kenyon’s Chronicles of Nick book series), fall into the owner trained category. Many owner trainers do so because waiting lists for program trained dogs can be several years long and many require that the service animal is the only dog in the house. Some people are willing to make that choice and rehome a pet dog to comply with the program stipulations, I am in no way trash talking the person who chooses to do so, or the program for having those rules. The fact is that most people do not expect the same level of behavior from their pet dogs as is required in a service animal.
Training my service animal has been my personal crucible.I’m not the same person I was five years ago. I am no one’s doormat or rug. Training my dogs has given more self-confidence than almost any other experience in my adult life. After the recent election, I need every bit of that confidence. In the face of a very real and very worrisome Trump presidency, we as service animal handlers need to shelve our bias and preconceived notions of each other. Someone once told me that our first and best advocates are always ourselves. We can’t be the advocates we will need to be for the next four years if we are fighting among ourselves.
My mother can tell you that I wrestled with anxiety and depression for years without the benefit of medicinal aid. She will tell you it sucked. How she and my sister never left sharp knives or even forks in places where I could easily get them. At least once a week there was a solving meltdown and at least one month there was an argument about going to a mental professional. It’s not that I don’t believe mental health is a real and necessary aspect of well-being, I didn’t think less of people who have prescriptions to help manage their mental balance. I just didn’t want to be the one taking the pills. It felt like admitting that I was, even more, an outcast. Mental illness on top of physical disability, who wants that label, especially in high school? I continued on in adamant denial until I was in college. I was having trouble getting my caregivers to show up on time so I can get to class. Many thought I was just being a slacker and refused to believe me no matter what I said. This, of course, affected my grades and self-esteem. On top of this my very best friend, the one who got me through high school math and told me what I needed to know to successfully navigate having a disability in college, got Lyme disease, missed the window where antibiotics would kill it and was told that because of other health conditions as well as the Lyme disease he could expect a severely shortened lifespan. He would eventually die before I turned 30. Finding out my friend was sick was the straw that broke the camels back. I went to a doctor and said I can’t do this anymore I need help.
It’s years later and I won’t tell you the medicine fixes everything all the time but it’s better. Some days still suck and there is not a single day where I don’t wish I didn’t need the extra help, but at the end of the day ,I like the post medicine version of me much better.To anybody struggling to come to terms with needing a prescription to help you be the best version of yourself, you are not alone and you are not weak no matter what someone else may say, especially if that someone else is in your own head. You deserve to be the best version of yourself you can be.