A.S. Face 0002 : Diane Scribe Niiganii

Disability– Curse or Gift                             October 7, 2011

I have talked about this topic a few times and after each time, I realized I had a pretty strong view point on it and only got stronger each time I talked about it or was asked about it. Over the years I have had to look at my disability from different perspectives. Firmly believing that everything happens for a reason and that God will not give me more than I can handle, I have still many struggles with my “disabled” identity. I kind of remember I was always a sick child with colds, ear infections, and tooth aches but I had my first memories of severe pain, fever and inflammation when I was in early puberty. I was in what I know now as a pain fog and I still don’t know the exact year and date all this occurred.  I was in the hospital for a while and even had to use a wheel chair for a few days. My left ankle had swollen up and was in so much pain anything touching it would make me scream. To me it was like I went in the hospital in the summer and came out in the winter. I spent several days alone I a large room. For thefirst couple of nights I could see many people looking at me when I was trying to sleep, people I didn’t recognize. It was like they were peering out from the corners where the ceiling met the walls, it was terrifying. I was happy when I got a roommate, a really nice young woman with beautiful long hair. She had cancer. It was the first time I had heard that word.

Following my stay in the hospital, which really was not more than two or three weeks, I started back to school but came down with a severe case of tonsillitis. It was my introduction to chronic infections that end in itis. I managed to make it through grade seven that year and I was never told what was wrong with me or why I was in the hospital. I wondered about it for years and years as I battled eye infections, urinary tract infections, bronchitis, ear infections, colds,and many other sorts of infections and virus’s that went around.

One day, while I was in university I called my mom and asked her if she ever knew what was wrong with me at that time. She said the doctor never told her and that she thought that I had gotten over whatever it was that I had. And my battle with illness went on. I got used to comments like “Are you sick again?” or “Geez you’re sick all the time.” I started to feel like it was my fault.

I had remembered back to the late summer I had gotten sick. It was the last summer I danced powwow competitively. There was one particular spot around the arbor where dancers would stumble or trip. One of my aunts told my mother to tell me not to dance near or on that spot because it had bad medicine there. I started to think maybe it had something to do with why my ankle had inflamed and why I had gotten so sick. It was even hinted at by a couple of my family members that that was what caused my sudden illness. I danced at a couple of demonstrations and events a few times after but my ankle was always weak and I would have sharp shooting pains or else in the evening constant aching pains in it. Finally I just had to give it up and I sold my outfit for spending money for a school trip to Ottawa.

When I was nineteen, I started to have severe pain in my hips, to the point where each step from sitting to walking to bathroom and back would make me scream and cry. My boyfriend had to help me to take my pants down and sit on the toilet then help me get up again. It was humiliating. I was given Entrophen for the pain but was never diagnosed with anything. I felt great for a while then was introduced to Iritis, which is a chronic eye infection.

When I was twenty, I was pregnant for the first time and as soon as I started to gain weight, I started to have severe pain in my hips again. It was to the point where walking, lying down and sitting were excruciating. I tried walking for exercise but I just couldn’t do it and no one around me understood or really noticed the pain I was in. I knew people thought I was lazy because I couldn’t do very much except house clean and do laundry, and even that was really hard.

Around the beginning of my third trimester, my mom took me to see a medicine man and I asked for help from the Grandfathers and my Higher Power. It helped me a great deal
emotionally, spiritually, and physically. I was told that whatever could be done was done, and the rest was up to me. I was also offered the opportunity to return again for more traditional healing. I knew that if there was anything negative on me (bad medicine), it was taken care of and I no longer had to think about it. I also knew in my heart that my baby was blessed during this special time and he would be okay.

As soon as my baby was born, I could barely lift him at times because the pain had moved to my rib cage. I no longer had severe pain in my hips although I would feel a twinge now
and then especially after walking short distances when I was carrying him. I couldn’t cough, sneeze or even laugh without sharp pain, sometimes so bad I would moan or scream out loud. This pain was with me for years. I started to learn to try to hid it and not to talk about it because when I did talk about it, the reactions were that it was that I was getting fat, I needed to exercise, I was angry.

My son passed away accidentally when I was twenty-two and some people told me I was in pain because I couldn’t let him go and I was angry about losing him. I couldn’t find anyone who would listen long enough to fully describe what I was going through because it was more than just one or two things, it was many things not only emotionally but physically too.

When I had my second son, the pain subsided a bit while I was pregnant but a few days after he was born I had a full blown fever and body pain worse than any flu I ever had. It was the first time I thought my pain was going to kill me. I was only 24. As my second son grew, I could barely lift him and we spent a lot of time lying on my bed talking to each other or I would hold him in my rocking chair. I think it made us really close. Bathing him would be the hardest. On good days I would take him out visiting with the help of a friend who would carry him for me or we would sit in the yard. It got a lot easier when he started using his walker.  When he started walking, I had to teach him that I couldn’t just pick him up on demand. He became independent very quickly but he always stayed close.

I was blessed with meeting my soul mate when I was thirty years old when I was in university. We knew right away we had common interests and never ran out of awesome things to talk about. We became close friends right away and my son really liked him. He recognized my health issues as very serious early on in our friendship and even took care of me when I had really bad cold after working on an event together.  I had found someone who listened and took me seriously and who loved me just the way I was mentally, emotionally and physically, with all my nuts and bolts. When we became a couple, he encouraged me to seek help right away whenever I started to get sick. We started to realize early on that what was going on with my health was pretty serious when the late night trips to the emergency rooms started to become more frequent and the pain more severe. I have been so blessed that we are able to walk together on our life’s journey. He and my son support me so much as I continue to discover my disabled self and try to live peacefully with her.

When I was about 36 –37 years old, I met a fantastic Doctor I wish could be cloned. He knew, based on my short medical history with the clinic and the brief physical exam he gave me, I had some form of arthritis. I had gone to see him for a cold. He was my new family doc and he changed my life. He referred me to a Rheumatologist and within a year I was diagnosed with Ankylosing Spondylitis, http://en.wikipedia.org/wiki/Ankylosing_spondylitis. At my second appointment with my family doc we made a list of all the hospitals I had ever been to and he gathered my history. I discovered that when I was in the hospital as a youth, I had been diagnosed with Reiter’s Syndrome, http://en.wikipedia.org/wiki/Reiter%27s_syndrome. My mother was never told. I was never told. Further, Reiter’s Syndrome is connected to Ankylosing Spondylitis. How I got Reiter’s Syndrome, I have no idea and I do not have the HLA-B27 gene associated with Ankylosing Spondylitis.

Through all the pain, illness, and personal challenges of dealing with post traumatic stress syndrome and having to come to terms with sibling abuse trauma, I managed to raise my son who is healthy and happy, get a post-secondary education, a have a career and a wonderful marriage that continues to grow beautifully. I have been fortunate to travel and learn so much from people all over North America and even parts of Central America all because of disability issues.

I actively seek help to be healthier in all parts of my life. It takes a lot of prayer, work, commitment and active communication with my health care team. The people who make up my team are: the Arthritis Day Hospital clinic team, my family doctor, my rheumatologist, my pharmacist team, and soon to be added is my psychologist. I am on medication I have to take on a daily basis to function and to manage my pain. I get an intra venous  treatment every six weeks of a drug called Remicade http://en.wikipedia.org/wiki/Infliximab. I am usually hooked up for about 2.5 – 3 hours each time.

I still battle infections and colds. I have to be careful not to pick up germs and as a result, I had a great fear of crowds and handling door knobs or handles. I also had fear of being bumped or accidentally falling which I seemed to do a lot.  I have learned to adjust my life by becoming being more active through social media so that I do not become isolated in my pain. I have learned to be honest about how I am feeling and to do something about it right away. I feel more comfortable with myself now and as a result feel comfortable around other people.

I still have challenges emotionally and with all the mental health issues that go along with my disabled identity. The hardest of all is learning more about my mental and emotional self and how it has affected my health stress wise. Stress is not good for anyone with arthritis or any other health issues for that matter. I have had to revisit my own history to understand what is disabling me. It is not easy.

Now if everything happens for a reason, what is the reason I have to live with what I have?  People say just let it go, don’t think about it. I have heard those comments several times, mostly by healthy people who don’t have any physical pain. It is not that easy.

How can a person not think “why me?” when the pain is driving them to cry, scream or vomit? I do what I can to deal with my pain and illness. I take ownership of it because if I don’t then I won’t take responsibility for it. I can’t just “not think about it.” I have changed my lifestyle, my friends, and my environment. I am constantly working at, and researching ways, to always improve my life and life around me. I work hard to be positive and to leave the negative aside.

Because my life is mostly positive now, I am surprised when someone around me is negative. I really hurt when I experience negativity directly and my trauma issues get triggered. I get defensive by getting angry. I realized it is because the positive outweighs the negative in my life now and some negative things can really shock me. I know this is an area where I really need to develop coping skills.

I accept when I am wrong and I can admit it. I accept when I am weak physically, emotionally and now even mentally. I fought the latter for a long time mostly because I was in denial about many things. Most of all I am truthful and honest with my life, especially to the people that mean the most to me. I am not afraid to tell someone I love them or that I am proud of them because I truly am. I am not afraid to say “I need help.” Sure I get lost sometime but I always find my way back.

I have made it this far for a reason. I am not sure what it is yet. Perhaps it is just living one more day, just because I can. Is it a curse or a gift?

I have come to learn that are many view points on looking at the issue of disability from my world view. The following are comments I have heard more than once by different people.

A person becomes disabled or is born disabled because:

  1. Someone has cursed the disabled person or their family because of vengeance, revenge or competition. They put bad medicine on them.
  2. A person got in the way of bad medicine meant for someone else and took on the illness, deformity or disability that was meant for someone else.
  3. A person has done something bad in their life, maybe was bitter and mean and as a result they have become disabled or ill. In addition to this, is that their condition/situation is their own fault and they deserve it because of how they were or what they did. The “I’m not surprised it happened to that person” reaction goes along with this.
  4. A person was putting bad medicine on someone else and it came back on them.
  5. A person who wants more power, money, recognition gets medicine to help achieve all that but at a price.  It comes back on a family member or loved one, usually someone close.
  6. A person is not doing things properly in their life, especially when it comes to sacred, traditional things and bad luck or disability and illness comes back on the people they love their family, or someone close to them.
  7. The person is holding anger and bitterness toward others inside and it is being manifested through disability, illness and pain. In this scenario, the person is totally to blame because the person can’t or refuses to let go so they keep themselves sick or disabled. It has nothing to do with outside forces. No one is to blame but the disabled person.
  8. A person made fun of another person’s disability, deformity, or illness and it came back on them or someone they love.
  9. The disabled person does not pray or believe in a higher power. A person would not be disabled if they prayed.
  10. A disabled person was dishonest and hurt others through dishonesty and it has come back on them or someone they love.

I could not believe I came up with 10. These are comments I heard all my life, right from when I was very young, some of them many, many times as a reason as to why I myself, am disabled.

To me all these views of disability are like curses. Someone has done something to someone, or inevitably, to themselves or someone they love. There is blame. With blame comes ignorance.

I think if my health issues were viewed as very real health issues when they first happened, I may have gotten the medical attention I needed right away when I needed it. I think the damage to my body would not have been as severe if my parents and family were educated on Reiter’s Syndrome and Ankylosing Spondylitis. If I knew it had a name, perhaps it could have saved me some stress and I would not have been as angry at my own culture which I was for many years. Perhaps we, as a family, could have learned earlier on how fragile life is and we may have even learned not to abuse each other, and ourselves, physically, emotionally, spiritually, and mentally. Before I got sick the first time, our family was pretty healthy and did not really experience illnesses like cancer and autoimmune diseases. At least that was how I saw it but then again, I am the youngest of seven and my perspective comes from here.

As for me, I don’t believe in curses. My grandfather once told me something that always eased my mind a bit when I would hear comments like what I previously mentioned. We were alone having lunch one day, “The only bad medicine is the one that comes out of here,” he said as he pointed to his mouth, “and the strongest medicine is here.” He pointed to his head. He told me if we keep our minds strong no bad medicine can bother us. It was a school day and that was the most important thing I learned when I was in Junior High. It really gets me through times when comments really hurt. Most of all it taught me to be honest and since he told me, I really try to watch what comes out of my mouth. There are times when I am so hurt I become angry and frustrated. I become mean and bitter. I admit it. It is hard to live in the world with an invisible disability, when you feel like absolutely no one understands, cares or believes you. I realize I react too quickly and I cry too quickly too. I also feel things very deeply.

To me, my disability is a gift and for whatever reason I was given it, I have to live with it in a good way no matter how hard it gets. I realize how fragile my life is and how easily it can be taken away with one invisible virus.

I see now that the positive far outweighs the negative in my life and no matter how ill I get at times, or when the pain becomes so severe, I know I am not alone in that isolated, frightening pain world whether it is emotional or physical. There are others who have to visit that world too at times and we battle together even though we are alone. I know I have people who support me and believe in me. I have community and communities.

My disability has led me to experience wonderful things, meet awesome people and try new, amazing things I never thought I would. I am not cursed. I am blessed. I have learned to protect my fragile self and interact when and where I am safe, where people understand me and believe me. I know there will be hard times. It is the nature of what disables me. I am consciously working to take the positive and leave the negative.

I think I experienced another growth spurt in becoming more peaceful with my disabled identity when I had a really great conversation with my twenty-three year old son. I was  just in the midst of a bad cold and coming out of a really stressful time when I mentioned to him that I felt bad that he didn’t have an opportunity for a life without illness and disability, a more normal life. His reply was, “Yea, but mom, then maybe I would be as judgmental as some people.” I was really surprised by his answer at first but then I realized two things. First, he is aware of disability and he accepts it as part of his life. Second, he learned to recognize bad medicine.

Anyone can get it.

No one knows how much it hurts unless they experience it themselves.

Keep on going, one more day…I keep telling myself.

Young and old, I won’t know a life without it.

Life changes so much, sometimes good, sometimes bad.

O my God! I pray so much!

Spine and tailbone, but that’s not all.

Iritis, bronchitis, tonsilitis and other chronic illnesses.

Night and day become wake and sleep.

Good days, bad days, I just take it as it comes.

Sometimes I think, I can’t take it any more.

People who understand make a difference.

One minute at a time is how it take it now.

Never give up! Never surrender! I keep teling myself.

Doing my best is sometimes all I can do.

Yesterday was an accomplishment because I made it through.

Love is healing and beautiful.

I am NOT my A.S. but I do take responsibility for it so I can learn what I can do about it.

Tomorrow is another day and I will do my best to make it a good one.

Some day is today.

DSN October 29, 2011  Random Thoughts on A.S.

Winnipeg, Manitoba Canada


25 Responses to “A.S. Face 0002 : Diane Scribe Niiganii”

  1. Thank you Diane for adding your story I can relate to a lot that you say and many of the experiences you have had through your life.

  2. Thank you Kevin.

  3. Dear Diane,
    Thank you so much for sharing your story with us. You are such an amazing person and such a positive attitude. You will be a remarkable asset to the A.S. community.

  4. Hi Diane,

    It’s me Patti from UCTC. Thank you for sharing your powerful story with us.
    I miss you and our special times/talks we shared. Thank you for sharing your wisdom with me at UCTC. I still have the grandfather you painted (“Patience” with flowers). I hope you are doing well. Say “Hi” to Tony and AJ for me. Take care. Thank you again.

    • Thanks for commenting Patty. I sure miss you too and all the great ladies and guys at UCTC. Hoping to drop by soon to visit.

  5. Social Media is AWESOMAZING!

    Diane Scribe Niiganii said this on October 9, 2011 at 7:45 pm

  6. I agree it brings such amazing people into your lives and enriches it so.

    Cookie Has AS said this on October 9, 2011 at 7:46 pm

  7. Wow, DeeDee. We’ve known each other for so many years and I had no idea your disability started so young. You are an inspiration to me and I’m glad that you are back in my life, even though it’s through Facebook. Thank you for being the strong, inspirational woman you are.

    Darlene Christie said this on October 9, 2011 at 8:42 pm

  8. Darlene, you are one of the people I remember fondly from my youth. I always thought about you over the years. Facebook sure does open up one’s world, doesn’t it. That is the challenge of living with a disability, no one knows. You have to try to explain it to people. It is really different and welcoming to communicate with people where they just know and you don’t have to explain about it. Thanks for always being part of my life.

    Diane Scribe Niiganii said this on October 9, 2011 at 8:49 pm

  9. Dear Diane,
    Thank you so much for being the first to respond to my vision. It is amazing to me that the first person who responded also has the same name as my best friend. She was my best friend growing up, and lost her life at the age of sixteen due to cancer. The Scar project is a remarkable project for honoring cancer patients and I am trying to create the same for Ankylosing Spondylitis. You are my sign, that I am headed in the right direction of accomplishing a life time vision. Thank you, Cookie

    Cookie said this on October 9, 2011 at 10:19 pm

  10. WOW!! Your story really touched me. When I read about your 1st pregnancy, it was like you were describing mine. Thank you so much for sharing your story. (hugs)

  11. Thank you Cookie, for taking the time to do this. It is an awesome page. I am so honored to be part of it. I wrote my story for self therapy and it really helped me. I hope it can help others too. You are awesome Cookie!

    Diane Scribe Niiganii said this on October 12, 2011 at 5:23 pm

  12. Thank you, so much Diane. It is my honor and pleasure to do this, I can’t wait to see the 1000 plus stories! Thank you for being my first to ask. Here is to making a difference!
    Bless you! Thank you, Sincerely Cookie

    Cookie Has AS said this on October 12, 2011 at 9:55 pm

  13. Diane, You have been through soo much! I love your fierce spirit and how you will not let AS get the best of you. You are an inspiration to all of us with AS. I am just beginning my journey with AS and to be honest I am scared to see what the future holds….so far, my symptoms are mostly tolerable, but I know it won’t last forever. You have shown me that even through terrible pain and misunderstanding, you can survive and succeed in life! Thank you so much for sharing your story.


  14. You are very welcome Jenn. it has not been an easy road, very painful in fact, but I always believe, what doesn’t kill you makes you stronger. Living with disease, has opened up a new world for me, I met new wonderful people and learned so much not just about the disease, but also about life. Even though it gets hard to focus on the positive side of things sometime, I really try and it helps. Having the support and understanding of others who know about AS really makes a difference in my life. Thanks for your comment, Jenn. Sending you positive thoughts…

    Diane Scribe Niiganii said this on October 12, 2011 at 5:34 pm

  15. Diane, thank you for your thoughtful and well written story. Your journey through self awareness, and your gift for writing will surely touch many people, as it has me. I have not yet written my story for this site, not because I have nothing to say, but because I want my words to accurately express my spirit and how I feel about life with AS. It takes some thought and a willingness to expose my vulnerabilities in such a public manner. My story will come, however, and when it does I hope I can be as articulate and expressive as you have been. Sending warm thoughts and strength your way as you continue your daily life… Tyler

    PS: Keep writing! This may very well be one of your greatest blessings…to others…to yourself.

    Tyler Hyder said this on October 14, 2011 at 7:08 am

  16. Tyler,
    I agree with you, she should continue writing. I am “still” working on mine. I want to take advantage of sharing my story and truth in complete detail. I look forward to reading yours.
    Sincerely Cookie

    Cookie Has AS said this on October 14, 2011 at 2:09 pm

  17. Thank you for your comments Tyler and Cookie. I will keep writing when I can as this is only part of my story..the part dealing with AS. Today has been a really hard day for me pain wise, the kind that makes me want to vomit when I move around or try to walk. I guess it is a 10 on the pain scale..life is tough, but I am tougher I like to think.
    Tyler was my first son’s name so it was really great to see your comment Tyler. It meant a lot to me.

    Diane Scribe Niiganii said this on October 19, 2011 at 1:49 am

  18. You are most welcome Sweetie!

    Cookie Has AS said this on October 19, 2011 at 3:37 am

  19. Wow Diane, as you probably know from Php’s room ( S. King;) hehe, I am rarely speachless.. but this post left me almost speachless…

    Everything happens for a reason and we met for a reason and I hope to stay in touch with you:)) since I’m truly honored to have met you.

    Greenbluebug ( who’s giving you a hug:)))
    will write you in the morning ( on jtv).
    You are a w e s o m e!
    God bless you ( NO there are no curses, only miracles)!

    Greenbluebug said this on October 23, 2011 at 8:31 am

  20. Hi Bug, you found me…YAY! I am so glad we met. Meeting you and Bap, really helped me reach out to what was available to me on the net. It changed my life…as you can see. Thanks so much! People like you and Cookie are awesome! I sent you a note already…lol. So happy we can stay in touch. C U on Jtv! God Bless you too, Greenbluebug.

    Diane Scribe Niiganii said this on October 24, 2011 at 5:22 am

  21. Your story is amazing!!! I hope as my son grows, he has a outlook like you do on his AS. I truly believe that people are given what they can handle in life. It seems unfair at times, and we will never truly know why…..but with each story I read, I get even more insight on this topic. Without all of you, I would only have the doctors and information I get off the internet. It really isnt the same because none of them know what it is truly like!! With every story, I see what it is and what it can be like first hand! Thank you so much for sharing your story!!

  22. Diane,
    Has your Rheumatologist checked your Igg (gammaglobulin) levels? After 26 yrs of AS, at first it was like my immune system was in hyper-drive and I didn’t get sick often. However, in the last few years I’ve been getting frequent infections. My Rheumatologist did bloodwork and found out that my immune system had started to fail. It’s called Hypogammaglobulinemia. I’ve been told it’s related to autoimmune disease. I can’t figure out which triggered which, the chicken or the egg type question…
    I give myself weekly infusions of gammaglobulin (borrowed immunities). I know what you mean about agitation of elevators & crowded rooms, anywhere there is the chance of high contagion from other people. Maybe you can get tested, the gammaglobulin helps fight infection.
    As for chronic pain, I look at it as an entity, who’s going to control my life it or me. So when I hurt real bad, I don’t let it control my life. It helps most of the time.
    Good Luck and God bless,

  23. Thank you for sharing your story. I can relate to SO MUCH of what you do, and have gone through. I was diagnosed with A.S. in 2007. At first, it wasn’t something that was “that bad”, and it will eventually get better. Well, here I am, 8 years later, disabled. And it’s so much more than the physical pain as you know. The emotional side, depression, anxiety, and the list goes on, take a toll on you much more than most can imagine. Although I hate the disease, and no one should have to bare it. But, there are blessings that come with it, and I am so happy to hear that you have received some! It’s hard to put a positive spin on life when you are hating at the moment but, it can be done. And you seem to be a fine example of that!

    Thanks again for sharing. I wish you didn’t have to go through all of this, it’s nice to know we are not alone.

    Take care, prayers of healing and positive energy sent your way.


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