As part of our Dating & Disability Series, the brave pioneers in our blogosphere are Tom and his fiancee Tanja from Kingston, ON (not the location made famous by Harry Belafonte !) I have known Tom in his single days and he was out of his previous relationship. The good thing is that he was able to have children and start a family. About two years ago, we started hearing mention of a person named Tanja. Tom was besotted in a cute way. I met Tom’s mother Linda some months ago and she said, “Tanja is the best thing that has happened to Tom”. Getting a rave review from your mother-in-law is no easy task!
Can you tell us a little about the difficulties in your life before meeting your partner?
I was diagnosed with Episodic Ataxia Type 2 in 2007 and disabled (unable to work) in 2008. At that point I was having great difficulty seeing, walking and performing basic daily tasks. Through trial and error with the assistance of my family doctor, neurologist, and neuro-ophthalmologist we discovered a medication that treats my nystagmus (a common symptom of EA2). I still struggle with coordination, fine motor skills and balance daily. And there are marked decreases in physical control during an attack. Having a loving supportive partner means that I’m not alone. Like everyone (disabled or able-bodied) it’s nice to have someone to share the good times as well as the bad ones. I read once that “we all have baggage; the secret is finding someone that will help you unpack”.
Were you completely happy with your health, living situation and financial situation?
Happiness is subjective. I was successful in my former career pre-ataxia. However, I was not at peace, I was always striving for what I didn’t have rather than appreciating all that I did. My journey has taught me to be thankful and has gratitude for the little things. There are times that I am discontented, but I try to use those as a catalyst for change. As Gandhi said, “Be the change that you wish to see in the world”. So I begin with gratitude and hope that I can be a positive influence in my own small way.
Did you feel like you are a person with a big circle of friends, family, and social circle? Has this (non-romantic) group helped you to cope with difficult situations?
I have many friends, but only a handful of close inner circle people who I trust with everything. I’m a social guy. I enjoy meeting new people and engaging in conversation. But when it comes down to deeply personal and meaningful conversation I reserve those for my most trusted. There have been a handful of buddies who have helped me when I’ve been struggling.
Were you in a serious relationship before acquiring a disability? How was your disability affecting relationships/friendships that you were already a part of?
I was in a serious relationship before and at the time of my disability. The relationship did not last as my former partner was unprepared for the dramatic life and circumstance (financial) changes that took place. My disability had no negative impacts on those close inner circle friendships I’ve had for years. My people are fantastic, and I am so grateful to have them in my life.
How did you meet your partner and how long have you been together?
Tanja and I met on eHarmony. It will be two years in March that we will have been together.
Did you wait before revealing your disability, and what reaction did your partner have to it.
I did not wait, I believe in full disclosure. Ataxia does not define who I am, however, it does play a major part in my daily life. Therefore, it was a no-brainer to mention it up front. Because I presented it in such a forthright manner with medical prognosis and long-term health expectations Tanja reacted in a positive manner. Of course, she was concerned, but not to the degree that she wouldn’t date me.
Are the major difficulties in your relationship, problems that are common to most couples in general? Or are there disagreements that are mainly centered on disability?
Our issues are no different than those experienced by the majority. However, with respect and understanding, we work together to build the best life we can have. I do fatigue more quickly than a non-disabled person, so long shopping trips are a no go for me.
What are some relationship tools or strategies that you use to overcome disputes or disagreements?
We maintain our relationship on a higher plain than the problems and respect that bad day happen. One disagreement or dispute does not dictate the strength or longevity of our relationship.
Sex is an important part of human relationships. How have you managed your intimacy with your partner considering that they may be limitations or maybe you have to create your own routines? Communication between partners is very important – any tips to share?
Like anything else in a healthy relationship, sex is important, but not the most important aspect of our relationship. I have been fortunate that my physical mobility has not been as impacted as many others I know. Therefore, sexual intimacy is not a problem. That said, having a healthy and mutually fulfilling sex life requires clear and honest communication. Some people like chocolate Ice cream (Tanja), others like vanilla (me). But without communicating those preferences the partner will not know. The same can be said in the bedroom.
We may assume that a couple with a disabled partner would have a reduced earning ability. Does the financial strain create problems for your children or partner because you are limited by the places you can go or ways you can give gifts to your loved ones?
Since becoming disabled there have been some financial changes to my lifestyle. However, I have made the necessary budgeting adjustments and now live quite comfortably. I do have a good pension from work, and that allows much freedom from worry.
Has your participation in religious activities helped you in managing life with a disability and increased your circle of friends? Has it caused any new issues that you didn’t expect to face?
I am not religious and do not attend any church. I do hold a strong belief that you should treat others the way you want to be treated, and I try to conduct myself accordingly.
Do you feel that there is any social stigma around a parent with a disability having a baby? Do you plan on having any children yourself? What challenges have you faced or think you will face if you were to have a newborn?
In western society, we are dominated by judgment. If one doesn’t look or act like the “norm” something must be wrong. I think that there is a stigma associated with disabled people having children. However, as with society, in general, there are people who are better equipped to raise children regardless of ability or disability. I was healthy when my children were young. However, if I were to have kids now I would struggle with fatigue. I simply could not keep up with the requirements of a young child.
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