Jooly's Joint: people with MS supporting each other

[MSers] [Family] [Fun] [Contact Jooly] [About Jooly] [Site Map]



Jooly's Joint 10th Birthday Party

Lorri's story

A funny thing happened while I was in England. I rediscovered me...

At the doors of British Airways at Newark International Airport, I said goodbye to my husband, Michael and son, Kristoffer. As I looked back I saw the worry and concern in their eyes. Once checked in and brought to the waiting area, I thought back to how this journey came to be.

Since being diagnosed on March 25th 1999, I had slowly let go of my independence and self confidence. I had seen the invitation to Jooly's 10th Birthday Party, but had never entertained the thought of attending.

This past Spring, I hosted the New Jersey JJ MS get together. The meeting was an amazing success thanks to all who had travelled far and wide to meet and make it a fun weekend. My husband and I invited those staying on til the day after the meet to our home for a barbeque. Sitting in the back garden, Jaydee (Brian), his wife Mary, Mel and Ronnie, James (Ikey) and his wife, Jane, Nique, Chuck and his parents, Jenn (peanut) and her family all seemed to be enjoying themsleves. The conversation naturally included the celebration to be held in Birmingham. Mel, Ronnie, Ikey and Jane could not believe that I had no intention of flying to England for the party. They, with good reason, didn't see why I wasn't capable of travelling and convinced me I could make the trip.

The next hurdle would be convincing my husband. Ronnie, now known as 'Michael's English Gal' spoke to Michael along with Ikey. Michael, seeing these people were more than folks meeting in a chatroom, but truly caring and good friends, grew to trust them. The conclusion: I was flying to England for the JJ Birthday Party.

Upon boarding the plane, I wasn't nervous, but rather excited. Looking around at the other passengers I sensed that for them this flight was rather uneventful. But for me this was the beginning of a journey not only in miles but within my soul. I decided that MS was not going to chip away at the person I was becoming as it had chipped away at the person I once had been.

As we began the descent into Heathrow Airport, I peered out the tiny window and saw the yellow hue of the lamposts dancing across the landscape of England. Once on the ground and through customs, I was met by Ikey and Jane. After a much welcome hug from both of them, my first question was 'Can I light up a smoke now'? Jane placed my luggage in their car, and we were off to Hampshire.

As we travelled the motorway I marvelled at the scenery. Unlike America, there were no strip malls or shops but rather green grass, sheep and trees. Before going to Ikey and Jane's home, they brought me to the Headley Park Hotel. There we enjoyed a few drinks, celebrated Ikey's birthday and met a few of their friends.

On Friday morning I awoke having no idea of what the plans were except for the JJ party the following day. Jane asked me to pack a small bag as we were off to Ross-On-Wye to stay with Ikey's sister and family and to meet up with Mel, Ronnie, Brian, Mary and Sheila. Nique would be arriving that afternoon from Scotland. We arrived in Ross-On-Wye late afternoon and were greeted by Ikey's sister, Maureen and husband, David. After being shown where we would be staying, we sat in their back garden drinking and snacking as Maureen and David were busy preparing what was to be a dinner party none of us would soon forget. A two piece jazz band set up in the conservatory, and played while we basked in the awe of this delightful evening. I looked around seeing nothing but smiles, hearing nothing but soft music and laughter, as the sun set beyond the meadows.

Saturday, the big day! Peanut (Jenn) arrived and once again we were in cars on our way to Birmingham. Arriving at the The Hilton Birmingham Metopole, neither Nique, Peanut nor myself had been advised by Ikey to reserve a room. For whatever reason we had assumed after the party we would be going back to Ikey and Jane's home!

Standing next to a pillar, I was pleasantly surprised to meet someone I actually knew! It was Lolli from Austrailia. We kissed and hugged, and I excused myself to have an emergency pow wow with Nique and Peanut. Deciding we needed to reserve a room, I worked my way to the queue as Peanut hunted down poor Ikey to ask if he had thought to book us a room, as he had said he would handle everything once we had arrived. He had not, but more importantly there was more on Ikey 's mind: where would the beer and wine be stored?

Our room booked and feeling quite proud of myself for handling this little crisis, we headed to the lounge where the anticipation for the party engulfed the air. As Ronnie had said, "If the Hilton staff expected 200 sick and self pitying people that evening, boy were they surprised!"

The Tenth Birthday Party to celebrate not only the chatroom but to honour Jooly was a brillant backdrop to what was really being celebrated that evening. Jooly's little idea ten years ago had not only created a place where fellow MSers could chat but her site has successfully weaved together a blanket of colorful characters who were determined to be the best they could by emerging as a family. A family that had saved money and prayed that here would be no relapses in order to honor the woman who had 'threaded the needle'.

From invisible symptoms, to canes, walkers and scooters the dancefloor was full. Friends holding other friends up, swaying to the beat of the music, laughter and smiles. Yes, for a moment time had stood still and MS was forgotten. Jooly stood and gave a heartfelt speach bringing tears to many an eye.

As the party came to an end, many of us were not ready to let this night slip away. We overtook the lounge leaving no seat vacant. The rug became a place to claim as we continued to celebrate not only Jooly but friendships that the chatroom had created. As time past, tiredness began settling in, and slowly we all headed to our rooms. Heads resting upon pillows we all knew we had been part of a magical evening.

Sunday morning after breakfast and many goodbyes, Peanut, who could only manage to stay until Monday was Ikey's prime concern. He had asked her what she had wanted to see before heading home, and she answered, 'everything'. That being an impossible feat, Peanut settled on seeing London.

Once in London, to Ikey's dismay all roads leading to the main attractions had been closed. He drove us all over, finally finding the road to where the London Eye was located. Jane got the tickets and before we knew it, we were standing in one of the compartments. The view was breathtaking! Here we were actually looking out at the River Thames, seeing Tower Bridge, the top of the Palace and the lovely landscape of London. Ikey never complained about the hours he had spent in the car enabling us to sight-see.

Seeing London was fantastic. I found myself trying to compare it to New York City, which was impossible. The volume of traffic may have been similiar but the narrow roads, and roundabouts inmeshed among statues, gardens, parks, shops and restaraunts left me in a state of awe.

After Peanut had flown back to America, Ikey, Jane, Nique and I were once again on the road back to Ross-On-Wye. On the way, Ikey drove us through Jane Austin country, where Nique and I visited her home. Being a fan of her writing, I found the artifacts and memorabilia fascinating. Nique and I were impressed with the garden. We took a photos of each other standing outside the Jane Austin house.

During that week, Ikey and Jane took Nique and I to Gloucester. There we visited the Gloucester Cathedral. Entering the doorway, one couldn't help but feel the presence of the past all around. I felt alive! Here within the glorious historic Cathedral, my eyes wandered, looking every which way, trying to take mental photos of the nave, the Great East Window and all that could be seen. Walking on headstones noticing the names on most were no longer legible I was intrigued at who I was standing on. What was their life like? Was it nobility or middle class? Questions and thoughts spun around in my mind as we strolled throughout the cathedral. We also learned that scenes from the "Harry Potter movies were filmed there because the cloisters resembled what author, JK Rowling, envisioned the school of wizards would look like.

We also toured the historical Gloucester Docks, where Nique and I were fortunate to have Ikey spot a man in uniform and have him agree to a photo. The air smelled so pure, as Jane and Nique wheeled Ikey and I all over Gloucester. Even being pushed didn't bother me on this day. This was as close to perfection as any day could be.

After Nique headed back to Scotland, I felt a piece of us was now missing. Ronnie felt it also so, even though it was pouring, we drove into the village of Ross-On-Wye, and went shopping. Like children, we splashed through puddles, making our way in and out of the shops. Soaked to the bone we found a cafe and had coffee.

Back at the house, we took off our wet clothes climbed into our jammies and I took a nap. When I awakened, I learned Ronnie had called Maureen and David to let them know we wouldn't be making it to their home for dinner. Instead, Ronnie made a platter of pate, cheeses, and bread. Mel poured wine and put a movie on about Welsh miners. Lying about sipping wine and 'grazing' (a word Ronnie taught me) was splendid. What could be better than sharing an evening like this with such wonderful friends? Even now, when Ronnie and I catch each other online, we can't help but return to that Saturday we spent in the rain.

As I mentioned in the beginning, this trip to England was more than a holiday or going to a party. The trip helped me realize I am blessed with a wonderful husband, friends who are truly family to me and I no longer need to be afraid to make plans. I don't have to be disheartened that I sometimes depend on others in order to feel independent. I have learned that although MS did chip away at the old me, I have to admit I like the new me better! The new me welcomes challenges and hope for tomorrow. The new me sees all the oportunities just waiting to be fullfilled. No, I'm far from perfect and have my bad days, but I've learned at the end of this journey to England a new beginning is just around the corner waiting to be fullfilled.



[MSers] [Family] [Fun] [Contact Jooly] [About Jooly] [Site Map]