Dakota Center for Independent Living

Living with a Disability

Living with disabilities can be more than a little challenging, but with the help of caring people and a little humor, you can still enjoy life. Whether you are dealing with a physical or mental disability, everyday life can be difficult. My name is Tonia and I have Bipolar Disorder and Parkinson’s disease and it has been interesting learning how to deal with it all.

I am not sure which I would prefer to live with if I had a choice, but over the years I have found ways to deal with it when I just feel like giving up.  My hands shake so badly sometimes that it is difficult to write, cook and really do anything with my hands.  Leave it to my son to make me laugh when all I wanted to do was cry.  He told me I could make great milkshakes without a blender.  I just broke out laughing because there was some truth to that.  At one point I was using a wheelchair because my legs just would not cooperate.  Guess they are stubborn like me.  My kids were very scared by that.  As a mother it broke my heart to see them scared to come near me.  So one night we decided to play Candy Land.  It was the only time the kids did not fight about who was going to win because they were too busy laughing at me.  They wanted to help me pick my card and move my character but I was determined to do it myself.  Well the cards ended up on the floor and I knocked everyone off the board but it was so wonderful to hear my kids laughing so hard and forget about my disabilities.  Cooking is always fun with shaky hands.  I made mashed potatoes  once and I think over half of them ended up on the floor.  I told the kids we should just have a picnic.  Who needs plates?  Of course we did not do that but it helped me not get upset with myself because I put mashed potatoes on the floor.  Every time I clean my house I am always laughing when I look at the ceiling and see little splatters of food up there.  At least I can cook a little.  I do get frustrated when I cannot write because my right hand is shaking too badly.  I do use the computer to communicate sometimes but I enjoy writing with pen and paper.  I was not going to let anything keep me from being able to do it.  I taught myself how to write left handed.  That was interesting but I was proud of myself that I did it.  It is the simple things that sometimes give you the most satisfaction.

I think I have a harder time with Bipolar.  It is not something people just know about you and can see how you may need help.  I do not even know all the time what I need from people.  The ups and downs can be tiring.  I wanted to get my college degree so badly but I was getting very overwhelmed with going full time and raising my kids as a single mom.  I thought I could do anything and I did not want it to be any other way.  That is the problem with mental disabilities.  You feel you should be able to do what anyone else can and in the same way.  It was actually going through college that made me have to ask for help.  I realized it was okay and I did not have to be ashamed that I have any type of disability.  If I wanted that college degree in my hand then I had to break through my own thoughts and allow people to help me.  I had to accept that I could not handle going full time and that it would take me more time to get my degree.  I had a hard time accepting that.  I was ashamed of that.  I wanted to show my kids that you can accomplish whatever your dreams no matter what you are dealing with.  That is exactly what I did.  I took part time classes and had some great instructors who worked with me and I got two degrees.  I am very proud of that.  A few years ago I never would have thought I would own a home and have some stability for my kids.

Here we are in our own  home with a little yard.  Nothing fancy but it is ours.  Do I like that I have to have a payee?  Not always but I have finally come to realize it has been the best thing for us.

I also have to come to realize that having these disabilities is not all a bad thing.  I have done things I never would have because of them.  Speaking to the legislature was a wonderful experience that I never expected to do.  I am proud I was able to do that.  Even just being able to speak at little events  and being able to help others to not be afraid or ashamed of what they are suffering from is a great feeling.  I have also met some people that I never would have who are huge supports for me.  On those days when I am crying for no reason I can turn to them and they remind me that I am okay. It is not my fault I feel this way.  Sometimes you just need to hear that.

What we all need to remember is no matter what we are dealing with, we all have abilities and it is up to us to decide if we are going to let our disabilities hinder us or motivate us.  Some days are easier than other and it will always be that way.  I am thankful  every day that my kids are healthy, happy, and I am still here to enjoy them.  That is really what matters. The center received a call from Community Action in September of 2013 requesting assistance for one of their consumers who was overwhelmed with everything going on in her life. We were told that Barb has only been able to communicate through e-mail because she is so emotionally fragile; she finds it difficult to complete a conversation. Staff sent her an email stating we would like to help and encouraged her to write back. She did and soon staff was communicating with her daily. Barb was finally able to come to the center in October where she met with staff and completed an intake. Barb stated that her first husband died and her second marriage ended in divorce. She has two sons from her first marriage, with one having Asperger’s Syndrome. Barb states that she has multiple disabilities of Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, and Syringomyelia.

She stated that she is losing her home due to foreclosure because she can no longer afford the payments. Barb does receive income from SSDI and a small retirement from her last job; where she had worked for 20 years until the pain stemming from her disabilities became so severe she could no longer work. Barb also stated that because she had not filed her taxes for a few years, her son could not complete the forms for financial assistance to help pay for his tuition.

Community Action had assisted Barb in locating a realtor that helped Barb delay the process of foreclosure while he put her house on the market. He was able to sell her home in December.  DCIL staff assisted Barb in applying for housing, they helped her in applying for Medicare Part D, Medicaid, the SNAP program. They also assisted her in obtaining Widows Benefits from SSA. Staff also assisted Barb in straightening out her taxes so her son could apply to college.  In February of 2014 Barb’s goal of finding an apartment was met. Together, Barb and staff visited the Emergency Food Pantry to obtain some food while waiting for her SNAP application to be approved.

Barb has been doing much better and is settled into her new apartment. Her son was able to attend the second semester of college and her second son has been to the center meeting with staff. He states that he is interested in the drivers permit course.