Sanchez and DeLeo, I need medical marijuana to rest from the constant explosions of pain

March 9, 11:31 AMBoston NORML ExaminerMike Cann

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Lori A. Frankian

www.LoriAFrankian.com

 

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Lori, you are in a wheel chair, what medical conditions are you dealing with?

First, let me say that there are many 'conditions' that I battle and manage on a daily basis. I am an immensely private person and NEVER want anyone feeling bad for me - EVER! With that said I can tell you that I am in pain from head to toe every-single-day - something that only a select few of my rocker buds know within the many circles that I hang in.

My primary disease is called Spinal Muscular Atrophy. I was diagnosed at age one and a half with six months to live. I am fourty three! My spirit has without a doubt kept me soaring. Music is the one thing that lifts the pain that is why it is soooooo crucial for me to make all the shows that I can. My talented and loving buds make enormous difference in my life and they have no idea how much they are needed to keep me going:) I didn't start progressing until 2007 and this has been life changing - a tough journey that I keep ploughing through.

* I also have Peripheral Neuropathy which began in 96' along with Small Fiber Neuropathy - both are extraordinarily painful. The difference between the two which are active every darn day is that PN is within the body and acts like a raging devil that stabs me with a machete throughout my legs/feet. These attacks can last anywhere from one day to a week, leaving me totally useless and hunched over in screaming pain. Not pretty. And these attacks keep me out of 'the scene' which kills me! SFN is almost worse because it is a 'condition' that has nerves growing on the outside of my skin (not visible to the human eye) and it runs from head to toe. So if someone touches my back, legs, feet it's like being cut open and having someone touch the raw open skin and man it's crazy painful but I have to mask the pain otherwise I'd be inside day and night and that's not how I want to live my life - ever.

* My joints and bones are in great pain after sitting for "40" years. I have osteoporosis which is felt every day as well.

Lastly, I will share a bare minimum here and say that I have great organ pain due to my petite size and the progression of my primary disease, SMA. I have officially been on pain meds for the past 5 months for the first time ever. Without Gabapentin, I would be a total recluse. Very disturbing but I take it so I can work.

I started smoking Marijuana at fourteen - purely for pleasure. Starting in 1996 it became a need to take the edge of everything exploding within. Once a pleasure habit, now a mandatory need to quell the nerve attacks and general body pain. It calms the beast within and allows for much needed function and peace!

Unfortunately, it is such an expensive medication and often challenging to obtain. I have a few fairly consistent resources (names withheld) but at times there are days or weeks that I have to go without and man, those nights are so tough for I cannot sleep without it due to the raging pain I face after a long day of masking, working or playing. This bill needs to get passed and I am here for live interviews to articulate why it is a safe and enormously necessary part of my life, my survival!

I think I met you moshing on the stage at the Freedom Rally for Graveyard BBQ, I always tend to see you out at rock shows, how do you keep so active? Any advice for people who are wheel chair bound on getting out into the world?

I am a veteran of the rock scene Mike. twenty three years plus in the scene starting back when we had a cluster of  venues: The Channel, The Rat, Bunratty's, The Abbey, all of which have been shut down as you know. I used to manage a band back in the early 90's - "JiggleScreen". A fabulous time in my life. Since then I prefer to simply enjoy the music vs. hammering it out with venues to get my band the money and exposure they deserved. It took away from the pleasure of my passion!

I keep active by pure 'will' and like I said above, a mysterious magical spirit that keeps me going on all fronts. Anyone with a chronic 'condition' has to literally force them self out into the world - once out - the distraction away from what I personally feel subsides to a degree but never really goes away. From 96' to present I have been putting on my game face and doing all that I can to make this world a better place through my work efforts and of course remaining 'the scene' that gives me my fix! People need to have a passion, period! Music of course is one but the leader is my need to teach people. This occurs via my public speaking, performing, advocating and most especially being out and about. I reach people simply by walking down the street. Strangers come up to me sharing that I inspire them after years of seeing me at either political / organizational events, after seeing me on TV or on stage, reading about me in The Globe or community news papers. If I can reach one person a day, my job is done! Society needs to understand that just because someone has a visual difference, a physical challenge of any kind that they feel and experience what everyone else does. Being an often invisible one, a minority is exhausting and frustrating because Society has these "norms" that they won't let go of! There is no "Normal" (no pun:) Mike. We (physically challenged) just 'are' and should be accepted into the mainstream of life but people are so afraid of connecting, accepting and afraid that hmmm maybe someday I will end up in a chair or having to deal with a life altering change - so they omit many of us from their sight-line. Watch TV / Movies / Commercials / Music Videos - you will rarely see a physically challenged person as a principal! A pitiful representation of an 'open society'. So - we don't exist. This lack of exposure on all fronts perpetuates the close-minded views of those of us who just happen to be a little different. Producers are focused on 'perfection' and stray away from incorporating a much needed message of great success due to a visual difference - it sucks! It's 2010 man - wake up America!!!


Who are some of your favorite bands and which have you liked the best at the Freedom Rally?

I have many favorite local and national bands that I am friends with and spend as much time as possible with - Here is a short list of who I hang with whether near or far (many more but this is who comes to mind immediately):

Prospect Hill
The Luxury
Jealousy Curve of PA
Gozu
Roadsaw
Graveyard BBQ - now on hiatus for a bit.
Pistol Shot Gypsy
Eve to Adam of NY
The Steepwater Band of Chicago
Dead Friends
SuperPower
Acaro
Powerman 500 - from day 1 - now based in LA
Cast of Kings - LA
The Kin - of NY
Super 400 - of Upstate NY
Dead Season of ME
Beneath The Stone
Haloburn - on hiatus
The LA Mob
Tester
Cortez
Burn the Witch
Red Vinyl
Mascara
One Bullet Solution
Breathe
Debris
Before the Rise
Egypt Central - of Memphis
Gene Dante
Heirosonic of PA
Grace Potter & the Nocturnals - of VT now in LA
Trust Company - of Alabama
Rose Hill Drive - of Colorado
Full Tilt
Common Thrill
Robert Randolph and the Family Band - of NJ
Build a Machine
The Trews - of Nova Scotia
Peter Prince
Mike Spauling aka Spaulding- of NH


You are also an agent for actors? How did you get into doing that and what do you like about it?

I am actually a business consultant for Actors. I began acting in 1985 while attending Northeastern University. I went to class by day then either worked my ass of to get auditions for TV / Film. My first TV series was "Spencer for Hire". I worked in features that came to Boston when given the opportunity which were few and far between here in Boston - the close minded city that claims to be liberal! Yah - RIGHT! I began venturing off to NY for Auditions and Modeling gigs. I had many "almosts" with ABC both in NY / LA. NY welcomed me with open arms and my love for that amazing city digs at my soul every day! Due to money, lack there of, I 1) can't afford to live right in Manhattan 2) find wheelchair accessible housing - a MAJOR problem for physically challenged folks in NY 3) I just couldn't afford the constant commute to work and fulfill my passion for acting - a passion that became tainted over the past number of years due to LA's control and obsession over presenting NOTHING having to do with reality aka exposing physically challenged actors. So I pulled out of the dirty game and opened my practice where I consider myself an expert in TV / Theatre / Film. I have been assisting actors in New England, NY, LA in getting to where they want to go professionally.

I have also been an advocate for the Homeless since 1984 and an advocate for Children in Foster Care since 2001. Two of the most fulfilling roles to date.

I am also on the Board of the Fenway Community Development Corporation (FCDC) where I am very active (and have been prior to accepting a seat of the Board) with in my community, The Fenway and throughout the city at large. I am immersed in so many areas (most listed above). I should have run for Mayor! (smile) - but seriously.

If you had a chance to talk to State Rep. Jeffrey Sanchez or MA House Leader, Bob DeLeo what would you want to tell them about medical marijuana?

I would tell Sanchez and DeLeo that my body requires marijuana in order to give my pain filled body a rest from the constant explosions of pain. Prescribed med's from pharma companies doesn't reach the pain and calm the storms brewing like marijuana does. It is a safe and effective medication that allows me to remain in the mainstream of life yet is tapping into funds that I need to pay all of my bills and trips to the grocery store. I chose/need to allocate my money towards relief otherwise all of my skills and city wide efforts are for not and what a shame it is that I have to hustle all of the time to obtain the magic of marijuana. A damn shame for someone like myself that has so much to offer the world! It's a crime that the government is haulting the medical marijuana bill in order to fulfill the greedy pharmaceutical companies that have secret ties and perks to the dirty decision making players! We all know what's going on and it's time to crush their secret bonds in order to allow the millions of brilliant people who really don't need to suffer at the hands of greed! May 'they' all get a sampling of daily torture at some point in their life - they will then get the full picture of what it's like to fight for ones' life and how marijuna is a blessing yet locked up in Congress. Again, wake up America!