Time Well Spent
FIRST ATLANTIC CONFERENCE ON CHRONIC PAIN
SEPTEMBER 18, 1998
LIVING WITH CHRONIC PAIN ~ MIND BODY AND SPIRIT
By Helen Tupper
September the 18th was one of the most exciting days of my life.
It seemed like waiting for Christmas, the excitement, the expectations, the wonder, (would people come?). We had spent many months working on details to assure everything would go well, and for me it was the first time I had been involved in producing anything of this nature. I must say that John Trainor, my co-host, never doubted that it would be anything but a huge success, and it had been his dream that a conference for people with chronic pain be held in the Maritimes.
Unfortunately John was plagued with ill health for the past three years, and it never did improve to the point that he could take part in the manner he had hoped to do. In fact, he was so ill that he was unable to attend the conference and that was a huge disappointment to us all. Thank goodness we were able to have the conference taped, so at least John could watch the video to see that indeed his dream was fulfilled.
I have to say that, for me, chairing the conference by myself was not my dream, and I really missed his presence and support. However, the show must go on!
We had no money when we started this project, and were most fortunate to be able to hold the conference in the new QEII Health Sciences Center, Royal Bank Lecture Theatre, for free. Many thanks to Dr. John Clark of the Pain Management Unit in our hospital, for arranging that for us. We were blessed to have the support of the Doctors and staff of the Pain Management Unit and they offered help wherever needed.
We were delighted to have financial assistance from Perdue Frederick, The Canadian Pain Society, and Rhone-Poulenc-Rorer, Specialty Therapeutics. Registration was twenty dollars, and we stipulated that if people were in financial difficulty, the fee would be waived. We felt that no one should be prevented form attending, because of finances.
When we began the work on the conference I had hoped to have some 50 people come. John has hoped for 100 plus. The day before the conference we had 104 pre-register! By Thursday evening I had to put a message on my phone to inform people about the conference details, and to encourage people to come. Then I simply went to bed!
I must mention Joanne Brown Bonomo, a nurse I met in the Pain Management Unit about a year and a half ago when I was there as a patient. When Joanne heard about the upcoming conference she offered assistance if needed, as she had lots of experience in putting on conferences. Boy was that an offer! I met with Joanne once, and in a 15 minute period she gave me an outline of what needed to be done, and when. I remember leaving that meeting thinking that I had hit paydirt. It also convinced me that this was a doable project.
Joanne agreed to approach the drug companies for money, and I was to design a brochure and prepare it for printing.
From there a brochure was designed, (my son and his computer can make magic!) and we were able to have it printed by the hospital printing department. Then the posters were designed. I made the mistake of printing them too; soon. Unfortunately, I had not included the speakers' names: a big mistake. We had been so lucky to have Dr. Mary Lynch as our afternoon speaker, and her name on the poster would attract many people. So I bought more paper and had another poster run off, with the speakers' names on them. Well worth the extra $33.00 it cost to re-do.
About the middle of August I mailed out the brochures to all the addresses I had at that time. That included our own support group members, and Support Group Leaders around the province.
Joanne had given me the names and addresses of all the pharmacies in the province. However, the postal codes were missing, so I spent a day in my husband's office with his secretary, inputting the names of the pharmacies, and adding the codes by using the ZipCode 2.5 in WordPerfect. I spent the next couple of days recovering from sitting at the computer for so long. One by-product of this conference for me, and there really were many, is that I became much more comfortable and efficient on the computer.
John had the brilliant idea of approaching two of the larger Pharmacies to see if they would deliver the posters by using their own courier system. I would never have thought of that, partly because I am not good at asking for things, (I am better now, after begging from anyone I could think of for the goodie bags we handed out) but it was a great idea that proved to save us a fair amount in postage because they did agree to do it for us.
I sent out posters to Norm Pepper of Bridgewater, Pat Harrison of Springhill, and others around the province who agreed to put them around their community. I became shameless in asking people to put out posters, or to put them up for display. John put many around as he went for his various appointments. We both carried them with a roll of scotch tape, everywhere we went.
Joanne arranged a meeting with a public relations representative from the hospital who agreed to make a press release about the conference, from the hospital. This was wonderful, because she not only knew who to release it to, but also, with the notices coming from the hospital, it was more likely to be read and noticed than if it came from an individual.
The following week I called all 21 people who were to receive the notice to make sure they did indeed receive it, and that it went to the right department. This proved to be time well spent, because not all faxes ended up in the right department. Another little something learned for the next time.
One of our support group members, Iain Jones, had been able to arrange with our local television cable station to have an interview done with John and me about chronic pain and the conference. This was wonderful, because TV is great P.R. The date was set, and John and I appeared at the CableVision Station at the appointed hour. Our Interviewer, Gwen Haliburton, does a show once a week, on Sunday evenings.
She does two shows which are shown twice, so this would really suit our purposes. Gwen had been given NACPAC Information before hand, and she conducted an excellent interview. It was shown the week before the conference, and the week after. The interview dealt with Chronic Pain and what it does to a person, and at the end we discussed the conference. So the showing after the conference was still informative even thought the conference was over.
The nurses at the Pain Clinic gave me all kinds of wonderful information dealing with chronic pain. I then took them to a local depot, and had one hundred copies made of each item. I wanted people to be able to take home information that they could read, and keep for reference. Much of what is said is easily forgotten, but printed words last and are readily accessible. This idea was well received. I also had pamphlets from some of the drug companies available for handouts as well. They were all gone at the end of the day, so that turned out to be a good idea too.
It was about that point that I suddenly thought of the goodie bags and what to put in them. That lead to thinking about the displays that I remembered at the other conferences - outside the rooms where the conference was held. I started phoning drug companies, health support companies, anyone that I could think of who might have something to donate to us. Some people responded very positively, other said that chronic pain was not an area that they had any interest in. I kept going, and met a lot people as I proceeded. I also learned a lot about conferences and what drug companies expected if they were to become involved.
John, a former Banker, approached the banking community for assistance, but none was forthcoming. As a measure of support, the drug rep. for Westwood Squibb kindly gave samples of a special skin lotion, even though it is not really related to chronic pain. So many nice people in the world. Lawtons, one of our local Pharmacies, donated the bags with catalogues showing health care products.
I also wanted to locate pens to put in the bags. I have to say they were the hardest things to find. Eventually, Sobeys, our largest grocery store agreed to supply them, and we were very grateful for the donation.
By this stage in the countdown, things were getting tight; my days were more than full. The afternoon rest period was a distant memory, and I was beginning to wilt. I considered myself lucky to be able to keep going. Unfortunately, John was still not doing well. He wanted so much to be at the conference.
On Thursday, the day before the conference, a radio interview that I had taped several days earlier, was aired at eight forty-five in the morning. The phone calls immediately started coming, and I couldn't get off the phone! My best friend was staying with me for help and support, because my husband was out of the province. After one and a half hours of steady talking on the phone, getting names and hearing about painful health histories, I had to take a break and give the phone to Anne.
One of those calls came from a local TV Station asking if I could give an interview that day sometime. I had been trying for two weeks to get the interest of the TV Stations but with the terrible air disaster of the SwissAir Flight 111, off Peggy's Cove, no one would commit a camera for something like the conference. I quickly called the public relations department that had been so helpful in getting the initial press release out, and told them of the call from the TV Station. When a TV camera is in the hospital someone from the public relations office must be with them at all times, so I knew they they would have to set it up. I also called the pain clinic to see if by chance, Dr. Lynch would be able to free up any time to do an interview. I left a message with the secretary at the Clinic.
Also on Thursday, Al Gaudet, our national president, and his wife Sandra were in Nova Scotia. John and I were supposed to meet them for lunch and welcome them to town. Al also brought down from Toronto, some things for our goodie bags. Anne Bell had been able to get Solitude Relaxation CD's and note pads. What wonderful Gifts! We were going to get these when we met for lunch, and I would take them home and put them, plus the pens, into the bags that had been stuffed with what we had been able to collect so far.
I heard back from the public relations Department about ten or ten-thirty that the interview was set for 1:00pm. I called Al to tell him this and pushed back our time for lunch.
I met the TV Crew at the hospital at one p.m., and when the PR person arrived we went upstairs to find Dr. Lynch. As crazy as this sounds, up to this time I had not met Dr. Lynch personally, even though we had spoken on the phone and had corresponded. Like everyone who meets her, I was impressed with her pleasant and vibrant presence. The interview was set up and they filmed what they wanted. At the end they asked me to stay for a few more minutes. I was watching my time thinking of Al and Sandra waiting at the restaurant for us.
Finally, I got released, and off I went to meet our guests.
After a very pleasant lunch with Al and Sandra, we arranged a rendezvous with our cars to transfer the goods from his van to my wagon. I left Al and Sandra to enjoy the rest of the day and I took off for the hospital where the conference was to be the next day. I had arranged to have my son meet me there to help take some of the "conference stuff" into the hospital. Joanne to the rescue again! She loaned us space in her office to stow the stuff overnight.
I arrived home around five p.m., and the boxes of goodie bags were still sitting in my living room as I left them, and no sign of my friend Anne. I checked my messages, and there were seventeen!! AIIEE!!!! I began to listen to them and as I was writing everyone down, Anne arrived home and began the work of putting the pens, plus CD's and notepads into the goodie bags, and I continued with the messages. By then, I was telling people to just come to the conference, for I couldn't take any more names for preregistration, because I had to have them typed in alphabetical order for the registration desk in the morning. Anne completed her task, and left for home.
The big morning arrived, and I was in the parking lot of the hospital at ten minutes to eight. Another friend arrived at the same time, and we loaded onto the wheelchairs the cookies that I had made for the coffee break, (22 dozen), plus the 1000 goodie bags onto another chair, and off we went. My son joined us and we arrived at The Royal Bank Lecture Theatre to find people already lined up down the hall, and two people already at the desk taking registration! (Bless Joanne, she already had taken down the first load of stuff from her office). I was blown away! I was thrilled to see so many people, but I felt utterly overwhelmed. On top of this I knew by this time that John was unable to attend!
I gave proper lists to people on the registration desk, and my son and I started to put up the signs that Connie and Iain Jones had done for us. Incidentally, I should mention that we also had very nice name tags designed for us by Connie Jones, with a really neat logo of an apple made with the letters CP. Connie said it is ours to do with as we like. We like!! I had it printed on a couple of signs, and we will be using it in the future on other material.
The exhibitors arrived and began setting up their displays. People kept arriving, and coming up to me saying: "you remember me, I called you to ask about the conference", so did a hundred other people! It was wonderful, the energy and joy was just intoxicating.
The people from the hospital who were to do the video were there and showed me how the microphone worked and I got organized to open the conference. The first thing I did was upset a full glass of water all over the podium with the electrical panel on it. My notes were floating! What a way to begin!
Dr. Mary McCarthy is a psychologist who offered to assist me in any way she could, and boy was I glad of her offer. She was on the registration desk before I got there, and later she set up the coffee supplies for me. She stayed all day. and when she saw something that needed doing, she quietly did it. She was a Godsend, and helped clean up as we left. People like her make a day like the conference day, run so much smoother. I am indeed very grateful for the assistance and moral support she provided me.
The day was amazing, and I was so pleased and thrilled; I can't really put it into words. We had 107 people register with another four or five who came in the afternoon. We ran out of goodie bags, and that was a bittersweet thing. I was pleased with the turnout, but sorry some people missed the treats. The three speakers were very well received, and they did a grand job of handling their individual topics.
THE CONFERENCE
KERMIT STICK spoke about the mind and chronic pain, and the connection to using breathing and mind set to control our pain. Acupuncture and massage are very good tools, but they don't all work for everyone, and we don't know why. He was able to explain or describe the different approaches to using acupuncture, specifically between Chinese traditional methods, and the newer North American ways. He took is through a short breathing exercise that helped us all relax a little. Kermit's expertise was much appreciated, and he left us wanting to learn more.
CANON EDWARD FIANDER had the difficult area of Spirituality and Living with Chronic Pain. He too was excellent. He began with a definition of spirituality and faith, and a mini-sermon on where and how we can utilize it. He then asked the audience to speak to the person beside them and discuss questions that he asked one at a time, three in total. He gave us ten minutes to discuss these questions, and at the end, opened the floor for general questions.
During these discussions the power and energy in the room was almost palpable. You had to be there to experience it, but it was so good and powerful. The individual people who did speak were eloquent in their descriptions of their faith journey, and the connection to chronic pain and why they were here. I felt that I could sense the walls coming down between people as they talked, and when that happens, you know that something more powerful than us, is at work. I found it very difficult to break it off, and as it was, it was twenty after twelve when I did.
Following Lunch in the cafeteria on the next floor, DR. MARY LYNCH, who I mentioned earlier, gave a dynamic and very educational address about the body and chronic pain. She used slides to explain what she was saying, and broke complicated medical terms into everyday language that made sense. She gave people hope with the reassurance that new work is being done all the time in the field of chronic pain. Many in the audience have visited her as a a patient, so she was well recognized and appreciated. We need more doctors like Dr. Lynch.
Each guest speaker was given a small water color painting of a Nova Scotian scene, as a token of our appreciation for donating their time and talent for free. We gave evaluation sheets to everyone at registration, and collected them at the closing. Also at the closing we presented our Ontario guests with The Order Of Good Times certificates from the Nova Scotia department of tourism. We wanted them to feel welcome, and come back again.
Betty Grant of Brampton, also on the board of NACPAC, made some beautiful tole painted items which she very kindly donated to our conference. We collected all the name tags, (now we have them for our next conference), put them in a large container, and had someone draw one at a time. The first two winners got the pieces that Betty gave us, one a lovely welcome sign, the other a beautiful round decorated box. The other two drawn names won a full body massage, donated by We Care, one of the companies who had a table outside the conference.
Support Group Leaders from areas outside the Halifax area included Diane Horn, and Norm Pepper from Bridgewater, Pat Harrison and Shirley Filmore from Springhill, and Sandra Peterson from Shelburne, Nova Scotia. I had them stand and be recognized near the end, but am sorry I didn't do it sooner, so they would have had a chance to visit before they left . . . My good intentions got lost in the excitement.
Al Gaudet then came to the front with a gift for me, it was totally unexpected. Betty Grant made beautiful candle sticks, and napkin rings. Very lovely, and they are perfect in my dining room. I was totally taken aback, but really do appreciate them.
It was now a little past 3:00 p.m., and the day was over. I thanked everyone for coming and making the effort to be there. I know only too well it took a lot of courage and strength to come and spend the whole day sitting at a conference. I also knew by looking out over the group that many were really in pain, but there was also a glow and an underlying excitement that hadn't been there in the morning. I hope that I was seeing "Hope".
I went home, had supper and fell into bed. I spent the next three days in bed, sleeping most of that time. I barely got up to eat, because my pain levels were through he roof! I honestly can't remember being so absolutely exhausted. But I felt good, because I knew we had achieved something very good. The one sad note in the day, was that John had missed the conference.
One of the recurring points in the returned evaluation sheets, was that " I learned that I am not alone". To me, that was what the conference was all about. That comment, made everything worthwhile. We wanted people to know about NACPAC, and to know that there are many of us who have chronic pain, so they are not alone. As long as we all remember that, we aren't ever really alone.
There were many good suggestions for future conferences., and some people left their names with phone numbers volunteering to help with the next one. That pleased me very much. The next one will be done with a full committee to share the load, and share the joy. And what a joy it is: I really am blessed to be able to have made it through without a major crash in health, and to be able to enjoy the aftermath of time well spent.