Contributed by: Grace
Reviewed by: Evelyn Corsini, MSW, August 2011
Grace is a 73-year-old woman living in Canada who was born and raised in Holland. She has lived with neuropathic pain for 14 years and describes that her neurologist calls her pain “Neuropathic Pain Syndrome” because no specific cause has been established.
My husband and I retired in 1996. I was 58 and my husband 62. We did not have big plans but had a few ideas about what we wanted to do. I loved my job and had a hard time retiring, but I also loved my hobby of nature and landscape photography. I often went out to the local Bird and Nature conservation area; it was beautiful any time of the year. I most often came at dawn and in the winter with frost, the Marshes were particularly beautiful. Also in the winter, with lots of snow the Birds were very interested in a little birdseed and made good targets for close-ups. Late April and early May was a nice time, when migrating birds would visit and early flowers such as Trylliums on the forest floor were fresh and promised new life. Fall was particularly beautiful from the golden hues of the trees to the fire red of Sumac shrubs and the beautiful weather that Autumn could bring. Retirement was a promising time for both of us.
While I was working I already had these undefined sharp knife like pains that only lasted for an instant, as well as burning and dull aching pains in my pelvic area. I was never one to run to a doctor right away. Besides it never lasted very long. However there came a time I was not able to ignore the pains anymore; the years that followed were filled with Doctor’s appointments, procedures, waiting rooms, sorry we can’t find anything, humiliations such as: “you just think you have pain”, whispers by nurses; “we all have our aches and pains” and many Doctor’s telling me to just take an over-the counter medication. Too much to even mention.
There came a time I never……..ever wanted to see a Doctor’s Office on the inside again, but in the meantime my pain increased and became crippling. Eventually I connected with a well-known Pain Clinic at a large Hospital in Toronto. It was such a change for me, meeting people who understood what I was going through, telling me about neuropathic pain syndrome, what might have caused it and what it was. The pain had spread to my legs feet and back. We discussed the use of a wheelchair, I talked to an OT and a chair was made to my particular needs. Eventually the Doctor was able to prescribe a combination of drugs that helped me through the day and having the chair enabled us to go places occasionally, have lunch out and made life a little easier for me.
Needless to say I had been unable to do my demanding hobby of landscape and nature photography. I had to make a decision and decided to donate my darkroom equipment to the Art Department of the Christian high school my grandchildren attended. It was very hard to let go. Of course in the meantime my film cameras and lenses etc. became obsolete and were not practical for me to use anymore. I sold my 3 very expensive cameras and other equipment such as lenses and filters for next to nothing. I bought a good quality digital camera with an excellent Macro capability. It serves me well for my current needs.
Fortunately my husband had no problem taking over the role that had been mine until now. He loves the cooking and all other day to day necessities to run the house. Of course, his expectations for our retirement changed as dramatically as mine, however he is a real trooper. Our faith in God is a constant in our life; we definitely believe we would never have been able to face the future without Him. We were also fortunate to find a girl who did the major cleaning every two weeks.
However it all left me with a tremendous amount of self pity; as well as the never ending pain that is neuropathic pain.
I now hope to finally tell you what I set out to do, how I learned to cope with my pain. I came to the conclusion that I had to replace my love for photography with another hobby. But it could not just be a hobby, it would have to be more than that. I needed to be able to have a passion for it, like I had for my photography. Something that would prevent me to succumb to self pity and pain.
I knew I always liked small things, miniature things. I knew there was a dollhouse store in our town. We visited the store and talked at length with Carol, the owner of the store. She was eager to tell me all I wanted to know about her hobby. She told me to start out with small simple projects, to not become just a collector but also a do it yourself hobbyist. My talk with her was truly a blessing from the Lord. It did not take me long before I knew that this was something I could really get into, I just loved the amazing small things that were available through Carol’s store, from Websites and so on. It was amazing how much there was to learn, about scale, Artisans and being true to certain eras such as Victorian, Edwardian, etc.
Please do not mistake Dollhouses and Miniatures for toys, far from. But I do not want to talk to you about what it is but what it does. A hobby that becomes a passion can do a great deal to re-focus your mind. Adults all over the world are into this hobby and through the Internet I was able to meet people who are as, or are even more passionate about miniatures than I am. The most popular scale for a dollhouse and the one I have adopted is 1 inch to 1 foot. I branched out into related hobbies, such as scale knitting.
This is to be able to knit in very tiny stitches to the scale one is working in. For instance a little infant doll in that scale is usually about 1″ to 2″ depending on the age of the infant. A knitted outfit needs to be knitted in very thin thread and very thin needles. All these supplies are available on specialized Websites and on E-bay. I do various sewing and needlework and knitting for many things needed in any home. Such as blankets, bedspreads, carpets in any size, etc. etc. I always enjoyed these skills in full size too. However last Christmas I knitted a scarf for my granddaughter and it felt I was knitting with “Broomsticks”
Believe me I know firsthand, how life-changing and extremely difficult it is to live with Neuropathic Pain. Social life disintegrates, friends drop off the face of the earth and eyes glaze over when you tell someone that you live with constant pain. There are times I long to go back to the outdoors and also work in my darkroom. But the reality, (there is always that reality) that for the moment is not realistic.
However I found the only way I can cope is to concentrate on something I love to do, and produce beautiful little scenes. Scenes that can be realistic to the point that everything is true to how it looks in real size. Or they can be somewhat of a caricature, these often contain dolls. They can make great gifts such as the one I made for my doctor; Titled “A Visit to the Doctor” based on something that happened to me when I was a child. In that case I often include the type written story.
To a degree this passion focuses my mind on something other than my pain, it also allows me to connect with people who are as passionate about this hobby as I am. It also allows me to talk to people who do not know that I am in pain. I am sure support groups are helpful, but I’d rather connect with people that only talk about the things I like, such as scale knitting, sewing, petit point embroidery, building from kits, changing kits, embellishing inexpensive items, scale dolls and many other topics. I have also been able to integrate my photography skills, since we often show each other our accomplishments.
Well folks I hope I have not bored you, I truly hope that I have given you some ideas. Don’t forget to pray!!!!!